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1、Towards a Healthier,Wealthier UK:Unlocking the Value of Healthcare DataJuly 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data2Who we arePage 3Executive summaryPage 4Chapter 01IntroductionPage 12Survey methodologyPage 54ReferencesPage 55Chapter 02Use cas

2、esPage 19Chapter 03Implementation factorsPage 32Chapter 04Key recommendationsPage 51About the authorsPage 53BCG|Centre for GrowthAbout the Centre for Growth:About the Centre for Growth:BCGs Centre for Growth focuses on accelerating sustainable and inclusive economic growth in the UK by working with

3、businesses,government,and wider society to deliver breakthrough outcomes.As part of BCG,the Centre for Growth brings together ideas,people,and action to drive the UK forward.We work with our global expert network to identify transformational opportunities,connect key decision-makers,and build coalit

4、ions for change.We offer long-term strategic insight,extensive cross-sector expertise,platforms for dialogue,and bias to action.About BCG:About BCG:Boston Consulting Group partners with leaders in business and society to tackle their most important challenges and capture their greatest opportunities

5、.BCG was the pioneer in business strategy when it was founded in 1963.Today,we work closely with clients to embrace a transformational approach aimed at benefiting all stakeholders-empowering organisations to grow,build a sustainable competitive advantage,and drive positive societal impact.Our diver

6、se global teams bring deep industry and functional expertise and a range of perspectives that challenge the status quo and spark change.BCG delivers solutions through leading-edge management consulting,technology and design,and corporate and digital ventures.We work in a uniquely collaborative model

7、 across the firm and throughout all levels of the organisation,fuelled by the goal of helping our clients thrive and enabling them to make the world a better place.“Collaboration can achieve breakthrough change.Opportunities for disruption can energise the UK economy.”The UK faces several challenges

8、 over the coming years as we exit a period of almost unprecedented uncertainty.But there are two that stand out-the poor outlook for the economy and the huge pressure weighing on our healthcare system.The countrys low productivity,falling real wages,and lagging business investment are hitting the ec

9、onomic growth outlook while inflation and interest rates are rising sharply precipitating a cost-of-living crisis.At the same time,both NHS waiting lists and the number of people out of the workforce due to long-term illness are at record highs of 7.42 million1and 2.5 million2respectively.Neither of

10、 these challenges are insurmountable.But solving them needs creative thinking and urgent action.With its vast amount of healthcare data and leading position in life sciences and artificial intelligence(AI),the UK has a unique opportunity to unlock the value of this resource and work towards becoming

11、 a healthier and wealthier country.Capturing the full benefits of healthcare data an opportunity that has been long mooted but never grasped can lead to better patient outcomes,more efficient healthcare delivery and will help drive R&D,innovation and investment across the life sciences and tech indu

12、stries.Where healthcare data has been used in this way,both regionally in the UK and in other countries,there have been significant benefits realised.In this paper we discuss the current challenges in utilising healthcare data and outline 18 key recommendations for policymakers to unlock the value o

13、f healthcare data in the UK.The full recommendation list can be found in Chapter 4.BCG|Centre for Growth4Towards a Healthier,Wealthier UK:Unlocking the Value of Healthcare DataExecutive summaryHealthcare data can have multiple benefits when used in the right way1.The Commonwealth Fund.Supporting Pat

14、ients Through Serious Illness and the End of Life:Sutter Healths AIM Model,January 2018.2.Simon et al.,2018.American Journal of Psychiatry.3.UCL.Mobile app speeds up review and treatment of acute kidney injury,August 2019.4.BCG.How Dutch Hospitals Make Value-Based Health Care Work,201860%Sutter Heal

15、th integrated real-time patient progress data into their clinical decision-making processes Delivered reductions of 60%in hospitalisation,13%in emergency department visits and 70%in days spent in ICUreduction in hospitalisations110pp+New models combined electronic health records and answers to quest

16、ionnaires Predicted suicide risk more accurately than previous modelsimprovement in suicide attempt prevention22000 App alerts clinicians to patients at risk of Acute Kidney Injury(AKI)Brings together data from blood tests,medical history and clinical decision toolssaving on hospital admission for a

17、 patient with AKI330%Data sharing for key value-based metrics across network Reoperations due to postoperative complications after lumpectomy dropped by 27%on averagereduction in reoperations after complications4NearlyBCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healt

18、hcare Data5To understand public perceptions around access and use of healthcare data,BCG conducted a representative survey of the public in England(references to the NHS in this report refer to NHS England,but much of our analysis is relevant across all nations in the UK).Our survey found that,contr

19、ary to popular belief,people are generally open to allowing access to their healthcare data.However,the publics support for data sharing is dependent on targeting the most impactful use cases,articulating outcomes,and ensuring that security and privacy concerns are addressed.Recommendation:Detail th

20、e outcomes from specific use cases of making healthcare data more accessible to generate public support and understanding.Support for sharing data with the NHS is very high,with 90%of people willing to share data with the NHS for any purpose.While support is lower for other organisations,there is st

21、ill much more support than opposition with the exception of tech companies.Here,building public trust will be vital if they are to be involved in this space.There is huge support for sharing personal health data with the NHS and more support than opposition for all other organisations,apart from tec

22、h companiesDo you support or oppose sharing your personal health data with the following for any purpose?90%41%39%38%33%13%7%29%31%31%32%27%3%5%29%28%29%30%58%The NHS1%Pharmaceutical companies2%Central government2%Academic institutionsLife sciences companies2%Tech companiesSupportNeither support nor

23、 opposeDont knowOpposeSource:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data6Our report and survey demonstrate that when the potential benefits are clearly communicated,and the right processes are put in place to manage trus

24、t,the public are supportive of allowing access to their data.However,previous missteps mean trust is fragile and cannot be taken for granted or squandered.Much work is already under way,building on the Goldacre Review and the NHSs“Data Saves Lives”strategy.But it is important the UK does not miss th

25、e opportunity to progress efforts in a way that maximises the potential value,both in terms of patient outcomes and wider economic benefits.We have identified and tested public support for a series of actions that can help achieve this dual value proposition.The move from data sharing,where data is

26、transferred to external parties,to data access,where data is hosted on platforms known as Secure Data Environments(SDEs)and access is controlled,has been under-discussed with the public.Our survey shows that when people are engaged on this point,a substantial majority(86%)said they felt more comfort

27、able with data access over data sharing.The UK is therefore already starting from a stronger position than ever before.To build on this we believe it is crucial to move towards targeting specific outcome-based use cases.These will help build and maintain public support and,by properly targeting the

28、use cases and designing the SDEs with them in mind,the potential value of data can be maximised.Leveraging AI and machine learning is a common theme which will be crucial across the piece if these outcome-based use cases are to be achieved.For example,modelling of early AI R&D technologies has alrea

29、dy indicated a potential reduction in time and cost of drug discovery by a minimum of 25-50%3.Recommendation:Focus on outcome-based use cases in the following four areas:I.PreventionRecommendation:Allow for integration of a wider variety of non-healthcare data into the SDEs including socioeconomic a

30、nd demographic data from tax records,welfare claims and census records,behavioural information from consumer data,and lifestyle data from wearables and mobile phones.This will support better identification of at risk groups within the population,helping to prevent disease before it develops or worse

31、ns.It will also help to improve communication,ensuring better targeting so people are more informed about their risks and healthier life choices.II.Disease pathways Recommendation:Fully integrate the widest range of healthcare data into SDEs,including biomarkers and multimodal health data.This will

32、help maximise understanding of diseases including better mapping of how diseases spread and develop,and the biomarkers used to identify them.It will also allow for more personalised interventions,as it increases the knowledge of how different groups respond to different treatments.III.Clinical trial

33、s Recommendation:Improve the process of setting up and recruiting for clinical trials in the UK,by developing an accessible concierge service to quickly determine whether a particular trial is feasible,as well as tools to explore the sensitivity of inclusion/exclusion criteria for clinical trial par

34、ticipants.Along with other steps,such as those set out in the recent Lord OShaughnessy review,this can help restore the UKs position as a leading place to conduct clinical trials.In turn,this should help drive investment and innovation into the UK across related sectors,and ensure the UK is at the f

35、orefront of healthcare discovery.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data7IV.Clinical careRecommendation:Leverage new technologies including machine learning,generative AI,and AI-driven algorithms to optimise clinical care decision-making and resou

36、rce management in the NHS.This can help improve diagnosis in hospitals,potentially reducing waiting times and improving treatment by giving a richer view of the impact of past treatments on different patients.We tested these use cases with the public in our survey and found broad support for all of

37、them.This illustrates that when the potential benefits and outcomes of accessing personal health data are properly explained,people are supportive.77%76%71%64%62%58%52%14%16%19%19%22%24%27%8%6%8%15%14%15%18%1%To help understand my individual likelihood of specific diseases or illnesses2%Enable impro

38、vements in clinical care processes such as screening for and diagnosing illnesses2%Comparing any treatments Im given with how others respond to help researchers understand how to treat specific diseases better2%Compiling a register of potential organ or blood donors for access by hospitals2%Help ide

39、ntify eligible participants in clinical trials to speed up clinical research3%Help hospital and medical staff recruitaccording to which services have highest need3%Enabling the government to understand where to build new medical facilities and how best to utilise existing onesSupportOpposeImagine yo

40、ur personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?SupportNeither support nor opposeDont knowOpposeThere is majority support for data being used in all use casesSource:BCG Healthcare Data Survey 2023BCG|Centre f

41、or GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data8As well as targeting these outcome-based use cases there are several success factors that are crucial for realising the full potential of data and the creation of the SDEs:Data transparency and public engagement Trust a

42、nd transparency are prerequisites when it comes to healthcare data.It is vital to proactively build public trust and ensure transparency at every stage of data access.This includes a genuine willingness to understand and communicate lessons that have been learnt from past mistakes.Recommendation:Put

43、 in place the right frameworks and mechanisms to deliver the level of transparency and information needed,including a clear effort to be open about what lessons have been learnt and how processes have been adapted.This will ensure that public trust is maintained over time.In the short term,a key par

44、t of this will be establishing better public communications around healthcare data usage and its potential benefits.This should form part of a wider long-term public engagement strategy that is coherent across NHS data projects.A common misconception has been that individuals oppose access to their

45、personal health data by default,which has led to a general unwillingness to engage the public on the topic.However,our results show that nearly three-quarters of people(73%)either wanted to be proactively told about the use of their data(37%)or be able to request the information(36%)when they wanted

46、.It is therefore important that stakeholders do not shy away from conversations about how,where,and why data is accessed.Section 3.1 details the key areas this campaign must address based on our survey findings.Recommendation:Establish a joined-up public engagement strategy that is consistently adop

47、ted across all NHS data projects,with a specific comms campaign around healthcare data usage and the potential benefits.In the longer term,the NHS should establish public decision panels,such as the public participation panel already used by Genomics England,and more accessible data usage registers

48、for engaging the public in decisions around how their data will be accessed and used.Our survey showed 42%said the use of public decision panels made them more comfortable with data being collected and accessed,while 47%were reassured by data usage registers.These steps are key to ensuring the publi

49、c are empowered with the right information and proactively involved in the decision-making process.Recommendation:Use public decision panels and data usage registers to engage the public in decisions around how their data will be accessed and used.This will help ensure they have a say in decision-ma

50、king processes and can review and refresh these processes over time(e.g.assess what level of engagement is needed from participants with relevant characteristics).Use of COPI noticesDuring the pandemic,Control of Patient Information(COPI)notices were used to expedite the gathering of and access to d

51、ata across the healthcare system,even if individuals had opted out of data sharing.COPI notices were used to support understanding of disease and were critical to the UKs rapid identification and delivery of treatments,including vaccines.We found there is broad support(53%)for deploying a similar ap

52、proach in the future.This rises significantly if used to address some of the most acute challenges facing the NHS.Nearly three-quarters of respondents support the use of notices(or similar)for researching chronic and/or serious diseases(73%)and treating and preventing long-term serious disease(72%).

53、Two-thirds(65%)also supported the use of these regulations to improve efficiencies in the NHS that would reduce patient backlog.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data9Consideration should be given to using this approach for the most difficult cha

54、llenges facing the NHS in the future.However,it must be done in such a way that engages the public early,involves them over time,and clearly explains the benefits and end goal.Recommendation:Consider using COPInotices more frequently beyond COVID-19.This includes utilising them for researching chron

55、ic and/or serious diseases,treating and preventing long-term serious diseases,and improving efficiencies in the NHS to reduce the backlog,as supported by the public.73%72%65%64%58%58%56%56%33%11%12%15%15%17%18%19%19%25%4%4%5%6%7%6%6%6%8%12%11%15%15%18%18%19%19%34%Researching chronic and/or serious d

56、iseases like cancer and AlzheimersTreating and preventing long-term serious diseases e.g.cardiovascular diseasesImproving efficiencies in the NHS to reduce the backlogResponding to other future public health emergenciesUnderstanding more about mental health conditionsHelping pharmaceutical companies

57、 developnew treatments for serious and/or long-term diseasesResearching and developing treatments for betterhealth e.g.smoking-related illnessesSpeeding up clinical trials to help identify and launch new drugs in the UKHelping digital health companies develop new products based on your needsDo you t

58、hink it is appropriate or inappropriate for data to be collected,used and shared in a similar way to during COVID-19 for each of the following scenarios?AppropriateNeither appropriate nor inappropriateDont knowInappropriateContinuing the same approach to data access used in COVID-19 garnered majorit

59、y support in a number of high impact areasSource:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data10Design and operation of SDEsAs part of the shift from data sharing to data access,the government is building a series of SDEs

60、at both a national and sub-national level to bring together data for research.Section 3.2 includes more detail on our series of recommendations to ensure they are set up in a way that maximises patient and economic benefits.The common theme is that the SDEsneed to be fully resourced over the medium

61、and long-term a potentially costly exercise.It is therefore vital that their value is fully captured and partially reinvested to cover their running costs and development over time.It will also be essential to have sufficient support from the Integrated Care Boards to ensure that the SDEsare suffici

62、ently funded and resourced.Recommendations:Review the Data Access Request Service(DARS)process once the SDEs are fully up and running to ensure it is as streamlined as possible,whilst maintaining the vital security and ethical checks on those seeking to access the data.Ensure the DARS process is suf

63、ficiently resourced.Review and revise(where appropriate)the necessary purpose and benefits of data access to also capture wider potential benefits to the UK economy from innovation.Create a service wrapper that provides all NHS SDEs(national and sub-national)with the same basic governance and admini

64、strative processes such as applications for permissions,requirements for approval,and management of the users accessing the data.Maintain an element of competition between SDEs such as on services and analytical tools,including marketplaces for them to help foster innovation and drive improvements.I

65、ntegrate data across the national SDE and sub-national SDEs,as well as the Federated Data Platform which is also being built.Bring skills into the NHS to ensure the quality of data on the SDEs is of the necessary level and the workforce is equipped to analyse the data and use the analytical tools pr

66、ovided.Ensure sufficient funding is put in place to target outcome-based use cases.Introduce targets to hold Integrated Care Boards(ICBs)directly accountable for creating research opportunities to ensure sufficient resourcing of SDEs.Capturing value from dataThe NHS must capture and reinvest the val

67、ue created from data access.This is vital for ensuring the effectiveness and longevity of SDEs and realising the wide-reaching benefits of better healthcare data access.A simple way to do this would be to charge certain organisations for access to the SDEs,though this may risk missing some of the va

68、lue created down the line.Furthermore,the current approach taken by the NHS is to make access to the SDEs free.If data access is to be free,it is vital the NHS uses alternative value-sharing mechanisms to adequately capture the potential value.This may require a flexible approach that draws upon a r

69、ange of short and long-term value-capturing mechanisms,depending on the situation.Clear guidance should be provided so all parts of the NHS are consistently able to understand the potential value in data use and negotiate appropriate terms that deliver maximum value.Some of this must then be reinves

70、ted back into local NHS services.This final point is crucial.We found that 66%of the public do not mind value or profits being generated from their healthcare data providing some of that value is reinvested into the health system and/or there are wider public benefits.When this happens,the level of

71、support for profit-making from health data was more than double that of those uncomfortable with any profit-making.We believe the best way to reinvest into the healthcare system would be to create a central fund where revenue from healthcare data is collected and used to reinvest in local NHS servic

72、es,as well as to help resource the SDEs over time.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data11Health data can be used to provide insights on drug developments and technical innovations.This can also result in future profits for those companies,as wel

73、l as wider public benefits through improved healthcare(e.g.more effective treatments for disease).Which of the following is closest to your view?6%25%35%29%5%Comfortable with health data generating profit in any scenarioComfortable with health data generating profit if it also generates wider public

74、 benefitsComfortable with health data generating profit if some of the profit is reinvested in the health systemUncomfortable with any profits generated from health dataDont knowRespondents were significantly more comfortable with profit being generated,if some of those profits were reinvested in th

75、e health systemRecommendations:Establish a range of value-sharing mechanisms to ensure the NHS captures maximum direct(e.g.financial)and indirect(e.g.health benefits)value from providing access to the healthcare data.Provide guidance for negotiating with commercial partners on how best to leverage t

76、he full range of value-sharing mechanisms.This will ensure maximum value according to the characteristics of each situation,including long-term value via intellectual property(where appropriate).Ensure value acquired through data is reinvested into local health systems and the SDEs.There are few pol

77、icies that could address pressure on the NHS and boost our economy making better use of healthcare data is one.Furthermore,it does not need major additional investment or spending.It is an opportunity we cannot afford to miss.Source:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healt

78、hier,Wealthier UK:Unlocking the Value of Healthcare Data12IntroductionThis paper sets out what we believe is needed to ensure the full benefits of healthcare data are captured for all and public trust is maintained over time.To support our research,we spoke to stakeholders across the healthcare spac

79、e,spanning the public,private and NGO sectors.We also conducted a representative survey of 2,000 members of the public to test views around healthcare data and support for our recommendations.Chapter 011.1.WHAT IS HEALTHCARE DATA?Healthcare data is any information about personal and population-level

80、 health.It includes personal health records(otherwise known as NHS records),information about healthcare and social care delivery,treatment history,health appointment records,and details of illnesses or conditions.It can include data from clinical research and diagnostic tests conducted by the NHS o

81、r private organisations.Health data can also include wider information about individuals such as ethnicity,date of birth,and location;and lifestyle factors like alcohol consumption,diet,exercise,smoking,and socioeconomic background.The volume of healthcare data is expanding rapidly and will continue

82、 to do so in scale and modalities,particularly with the era of remote monitoring.When used for research or to inform healthcare processes,health data is de-identified to ensure patients remain anonymous.Healthcare data can be legally used to research diseases,identify treatments,inform provision of

83、health or social care services,or guide local and national health policies.At the moment,personal health and care data is mostly held by local NHS trusts.However,it has sometimes been brought together at a national level when required,for example during the COVID-19 pandemic.In the UK,it is importan

84、t to note that while parts of the legal and R&D landscape are shared nationally,responsibility for health services is devolved.1.2.BENEFITS OF HEALTHCARE DATAHealthcare data in abstract does not have much value but when used in the right way and to the right ends,it can have multiple benefits:1.Bett

85、er outcomes for patients.Leveraging data can help us better understand the causes of disease and disease pathways.This allows for better and potentially quicker treatments for patients,with less trial and error,and applies to both physical and mental health.Better patient outcomes not only improve h

86、ealth and happiness,but also mean fewer people off work through sickness,more labour availability,and a reduction in lost economic output.Sutter Health,a California-based network of healthcare providers,successfully integrated real-time patient progress data into their clinical decision-making proce

87、sses.This integration resulted in significant reductions,including 60%fewer hospitalisations,13%fewer emergency department visits,and a 70%decrease in intensive care days for severely ill patients4.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data132.Better

88、 understanding of illness.Healthcare data can help doctors and patients better understand the causes of illness,particularly when it is combined with wider lifestyle and economic data.As a result,healthcare professionals can more easily identify and implement the steps necessary to prevent serious i

89、llness.This will result in a healthier population that is less likely to be economically inactive.It will also help ease the burden on the NHSs stretched resources by reducing the number of people requiring treatment.3.Improved efficiency.Data can show which parts of the healthcare system drive best

90、 impact.This can help underpin a more efficient allocation of financial,staffing or infrastructure resources.Ultimately,better value for money in the NHS benefits everyone.In the Royal Free London NHS Foundation Trust,an app that alerts clinicians to patients at risk of Acute Kidney Injury(AKI)has r

91、esulted in a 2000 reduction in the cost of a hospital admission for a patient with AKI5.Clinicians were able to respond to urgent AKI cases in 14 minutes or less-a process which would have taken several hours previously.The app brings together data from blood tests with a patients medical history as

92、 well as decision tree tools used in clinical care to identify at-risk patients.4.A foundation for innovation and investment.Leveraging healthcare data in the right way can also support innovation and investment in key UK sectors such as life sciences,medical technology,biotech,and pharmaceuticals.T

93、he unique breadth and depth of UK data means that firms in these sectors will be able to innovate in ways that might not be possible elsewhere.This,in turn,will help drive investment in these sectors across the UK.When healthcare data is used more effectively,it can create a virtuous circle of value

94、,leading to richer and deeper datasets that provide further insight and learning.Healthcare data can have multiple benefits when used in the right way1.The Commonwealth Fund.Supporting Patients Through Serious Illness and the End of Life:Sutter Healths AIM Model,January 2018.2.Simon et al.,2018.Amer

95、ican Journal of Psychiatry.3.UCL.Mobile app speeds up review and treatment of acute kidney injury,August 2019.4.BCG.How Dutch Hospitals Make Value-Based Health Care Work,2018Fig 1.Examples of impact from healthcare data use60%Sutter Health integrated real-time patient progress data into their clinic

96、al decision-making processes Delivered reductions of 60%in hospitalisation,13%in emergency department visits and 70%in days spent in ICUreduction in hospitalisations110pp+New models combined electronic health records and answers toquestionnaires Predicted suicide risk more accuratelythan previous mo

97、delsimprovement in suicide attempt prevention22000 App alerts clinicians to patients at riskof Acute Kidney Injury(AKI)Brings together data from blood tests,medical history and clinical decision toolssaving on hospital admission for a patient with AKI330%Data sharing for key value-basedmetrics acros

98、s network Reoperations due to postoperative complications after lumpectomydropped by 27%on averagereduction in reoperations after complications4NearlyBCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data141.3.UK COMPETITIVE ADVANTAGESThe UK has several overlapp

99、ing strengths and advantages which put the country in a strong and possibly unique position to fully capture the benefits of healthcare data.DataThe nature of its healthcare system gives the UK a unique breadth and depth of healthcare data.For example,NHS GP records are an ethnically diverse dataset

100、 that provide nearly 75 years of detailed data across a population of tens of millions.The diversity of UK data gives researchers rich insights into how individuals and communities respond differently to disease,and enables them to unearth relationships between populations and health.During the firs

101、t wave of the COVID-19 pandemic,despite the US having a huge number of COVID-19 patients and research institutions,most vital research on risk factors for COVID-19 mortality and features of long COVID came from the UK.This was because public health researchers had access to anonymised data from 56 m

102、illion NHS patients medical records,whereas the US had almost no centralised medical data at the time.Healthcare innovations also require rapid access to a large pool of diverse patients.The NHS is the largest integrated healthcare provider in the world,with 300 million yearly GP consultations alone

103、6.Coupled with huge biomedical datasets from Genomics England,UK Biobank and Our Future Health,this makes the UK a gateway for innovators to develop proofs of concept on a diverse population,prove that treatments are clinically effective and scale up reliably within a single system.It also highlight

104、s that the data goes beyond the NHS,reinforcing the UKs unique breadth and depth of healthcare data.However,much of this data is currently disconnected and hard to access,limiting the value and insights it can provide.ResearchThe UKs science and research offerings are amongst the worlds best.UK univ

105、ersities spearhead the global ranking for life sciences teaching and research,with two in the top five,and ranking first and second for research7.UK researchers produce the third highest number of life sciences papers worldwide8,ranking first for the number of publications that are in the top 1%of m

106、ost-cited medical sciences publications9.On clinical research,the UK is one of the top three destinations for delivery of commercial early-phase trials and delivered 12%of all global trials for innovative cell and gene therapies in 201910.IndustryThe UKs life sciences sector is world-leading.Over 5,

107、600 life sciences businesses operate in the country-including all of the top 30 global medical technology companies,and the top 25 global pharmaceutical companies11.Life sciences businesses in the UK generate nearly 90 billion in turnover12and directly employ more than 250,000 people13.In 2021,the U

108、K ranked second globally against comparator countries for life sciences inward foreign direct investment capital expenditure14.The UK also leads Europe in terms of biotech products in development,which are estimated to be worth 80 billion in turnover,and to generate exports of 30 billion15.The UKs a

109、rtificial intelligence(AI)sector is also thriving.The country is home to more than 3,000 AI companies,with total revenues of over 10.6 billion16.It currently ranks third in the world in terms of investment,innovation,and implementation of AI17,and is home to twice as many companies providing AI prod

110、ucts and services than any other European country18.A new 21 million fund has recently been announced to accelerate the use of AI across the NHS19.Global comparative advantages in these two sectors mean the UK has the tools,skills and environment to capitalise on the value of healthcare data.BCG|Cen

111、tre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data15FundingAs well as having one of the worlds leading financial centres,the UK benefits from a supportive start-up and early-stage funding ecosystem.The UK ranks third globally in number of start-ups and venture capi

112、tal(VC)investments20.In 2021,the value of inward life sciences foreign direct investment was 1.9 billion,the worlds second highest21.UK biotech and medtech start-ups received a record 4.5 billion in venture capital and public financing in 2021;over half of that was through venture capital,meaning UK

113、 biotechs landed half of Europes VC pot for the sector an 81%increase over UKs 2020 figures,despite Europes biotech investment falling 12%as a whole22.Of course,there are factors weighing on the UKs competitiveness in this space.Brexit has had an impact on the attractiveness of the UK as a place to

114、license medicines,develop medical devices,and perform clinical trials,as separate approvals and processes will be needed for the EU.Furthermore,the size of the UK market is not always sufficient to attract the global firms which operate in these arenas.That said,this drives home the need to leverage

115、 the opportunities and areas of competitive advantage which the UK does have.1.4.WHY NOW?There has long been discussion about capturing the full benefits of healthcare data,but the project has never been fully realised.However,we believe this time is different,for several reasons.It must be now.The

116、current combination of healthcare and economic challenges means the UK cannot afford to squander an opportunity to tackle both at once.In the year between May 2022 and May 2023,the average time for Medicines and Healthcare products Regulatory Agency(MHRA)first reviews in the UK of Phase I-IV patient

117、 trials increased almost four-fold at 125 vs.32 days23.The ONS reported a record high of 185.6 million working days lost to sickness or injury in 2022,with the sickness absence rate having increased 0.4 percentage points from 2021 alone24.The impact of longer-term sickness has also negatively affect

118、ed labour productivity,which at the end of January 2023 was the most common reason for economic inactivity.Declining clinical trial activity will also mean that UK patients do not get access to innovation as early as other markets.We now know the potential power of data.The use of data and digital p

119、rocesses during COVID-19 has shown the meaningful difference that proper use of healthcare data can make.Our survey found that 61%of the UK public support the use of emergency regulations that allowed the NHS to share confidential patient information with organisations for COVID-19 purposes;even if

120、they had previously opted out of data sharing.When asked if the same regulations should continue to be applied to improve processes,support health research,and to improve patient outcomes,53%were in support.We are now seeing the strongest-ever confluence of expertise and competitiveness in the UK.Th

121、e combination of a world-class life sciences sector,a leading tech sector,deep capital markets,and data collected over many decades by the healthcare system make the UK uniquely placed to fully capture the benefits of healthcare data for all.There is already much work underway in this space.However,

122、to fully capture the benefits across both improved healthcare outcomes and economic prosperity,it is vital that it is done right.The UK has an opportunity to compete with the EU.While Brexit has impacted the UK healthcare sector,the EU is also facing several challenges that give the UK an opportunit

123、y not only to halt any decline but also to attract new investment.The numbers of drugs developed in the EU flatlined between 2017 and 2022,BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data16compared with the US,where it grew 23%from a higher starting point2

124、5.The recent European Commission proposals on reforming EU pharmaceutical legislation have provoked concern in the industry.Specifically,the plans to reduce the period of exclusivity for drugs developed in the EU have raised concerns around IP protection and the ability to generate long-term returns

125、 on investment in the EU.This presents an opportunity for the UK to take a different approach and present itself as a more attractive place for R&D investments.1.5.STATE OF PLAY A series of government strategies touch on various aspects of the data issue.The Life Sciences Vision identified data as a

126、 key component to the prosperity of the sector;the NHS Long Term Plan established the importance of data to deliver improved healthcare and medical breakthroughs for the NHS;and the Department for Health and Social Cares vision for The Future of UK Clinical Research Delivery highlights the importanc

127、e of improved data availability and quality.This all sits around the NHSs Data Saves Lives strategy.Published in June 2022,it builds on the work of the Goldacre Review in setting out the overarching approach to the UKs healthcare data.It includes a commitment to transition from data sharing to data

128、access through the creation of Secure Data Environments(SDEs)260 million has been earmarked for these across the UK.(See Fig.2 for a definition of data sharing and data access).This shift from data sharing to data access is crucial,and could be transformative for peoples level of trust around their

129、healthcare data.As part of our survey,we described these approaches and asked respondents which they felt more comfortable with.Data access was the preference for 86%of respondents.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data17Which of the following wa

130、ys of accessing personal health data would you feel more comfortable with?A:Data is stored on platforms that have the highest privacy and security protocols.The organisation that runs the data platform must approve anyone who wants to access the data.They can control what data users see and what the

131、y can do with it.Data cannot be removed from the platform to be stored or used elsewhere.B:Organisations can transfer data to third parties through data sharing agreements.These agreements outline how data can be used,and what privacy and security standards are needed.Requirements can differ each ti

132、me.Once transferred,the data is the responsibility of the third party and it can be accessed freely by this third party.Although the third party is under a legal obligation to use the data only as agreed,you may not be able to verify how the data is used once its been transferred.86%6%8%ABDont knowT

133、here is an overwhelming preference for use of a more secure data access model over a data sharing modelFig 2.Data sharing and data access:definitions and survey resultsThe work on data access has already begun,with the creation of an interoperable NHS Research Secure Data Environment Network.As well

134、 as the national NHS England SDE,the NHS England Data for R&D Programme is funding development of regional-scale sub-national SDEs.These sub-national SDEs are NHS-led and bring together Integrated Care Boards with local universities and industry partners to build on existing partnerships.NHS funding

135、 will mean sub-national SDE coverage across England.Funding has currently been awarded to the East of England;East Midlands;Great Western;Kent and Medway and Sussex;London;North East and North Cumbria;North West;Thames Valley and Surrey;Wessex;West Midlands;Yorkshire and Humber.Source:BCG Healthcare

136、 Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data18In addition,the NHS is progressing a 480 million programme to build a Federated Data Platform(FDP),which would enable every hospital trust and integrated care system(ICS)to connect and shar

137、e information between their individual data platforms26.Initially,the FDP will be used to support five national NHS priorities around improving its operational efficiency:1.Elective recovery reducing the backlog for appointment and treatments.2.Vaccination and immunisation vaccinating and immunising

138、 vulnerable people,ensuring equality of access across different communities.3.Population health management to help local NHS systems understand and proactively plan services to meet the evolving needs of their population.4.Care coordination reducing long stays in hospitals by improving coordination

139、between different health and care services.5.Supply chain management improve value for money by optimising NHS supply chains and enabling better purchasing decisions.These investments come alongside 2.1 billion for NHS IT upgrades and improvements27.The UKs commitment to furthering its data capabili

140、ties has been additionally supported by its sustained funding in AI technology and innovation.In early 2023,to accelerate research,the government announced that 16 million would be allocated to the nine most promising AI healthcare technologies28.This investment contributes to a total investment of

141、123 million across three government funding rounds in 86 AI technologies to date.This has supported over 300,000 patients through improvements to care,and treatment for health conditions such as cancer,heart disease,diabetes,mental health,and neurological disorders.These steps are welcome.But it is

142、crucial that the various data environments and related platforms are set up in the right way to fully leverage the benefits of the data for all.So far,the focus on the construction of the SDEs and FDP has understandably been on leveraging data to help improve healthcare research and operational effi

143、ciency.However,to fully capture the benefits of this data for the wider economy and broader patient outcomes,further steps need to be taken both in terms of the use cases,and the structures put in place around the SDEs.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Heal

144、thcare Data19So far,the NHS has laid out six high-level use cases on which to target current and future R&D investments:1.AI/algorithm development testing,training,and validation.2.Clinical trial activities feasibility,recruitment,efficacy through short-and long-term trial follow-up.3.Real-world stu

145、dies safety,effectiveness,and cost effectiveness.4.Translational research academic discovery and implementation of discovery into practice.5.Epidemiological studies large cohorts for population health research.6.Health systems research evaluation of systems or processes,including operational and app

146、lied research.7.These use cases are a good starting point for building the necessary data architecture.However,they remain focused on process.We believe that to fully understand and capture the patient and economic benefits of healthcare data,it is important to also focus closely on the outcomes of

147、specific use cases.Detailing these outcomes is vital for generating public support and understanding.Our survey showed that where specific use cases and explanations for data are provided,the public are much more willing to support allowing access to their data.Fundamentally,people need to see the l

148、ink between their data and the good it can do,rather than just being asked to allow access to their data.Use casesChapter 02BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data2077%76%71%64%62%58%52%14%16%19%19%22%24%27%1%8%8%15%14%15%18%Help understand my ind

149、ividual likelihood of specific diseases or illnesses6%2%Enable improvements in clinical care processes such as screening for and diagnosing illnesses2%Comparing any treatments Im given with how others respond to help researchers understand how to treat specific diseases better2%Compiling a register

150、of potential organ or blood donors for access by hospitals2%Help identify eligible participants in clinical trials to speed up clinical research3%Help hospital and medical staff recruitment according to which services have highest need3%Enabling the government to understand where to build new medica

151、l facilities and how best to utilise existing onesSupportOpposeImagine your personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?SupportNeither support nor opposeDont knowOpposeThere is majority support for data bein

152、g used in all use casesFig 3.Public attitudes to healthcare data access for use casesTo define a set of outcome-driven use cases,we sought input from across the healthcare sector with the aim of identifying use cases that could drive specific outcomes related to major problems faced across the indus

153、try.These also had to meet criteria of improving patient outcomes and/or driving wider economic benefits.Finally,they had to have broad public support or the ability to generate public support together with a wider campaign.As part of our survey,we tested public opinions on these outlined use cases

154、alongside a variety of other potential applications;there was majority support amongst respondents for the four targeted use cases detailed below.In this section,we explore four outcome-driven use cases and set out recommendations for both public and private organisations looking to capture value in

155、 the healthcare data space.2.1.PREVENTIONProblem statement:Sickness rates in the UK have risen to an all-time high yet investment in preventive healthcare remains low in comparison to the potential gainThe NHSs Long Term Plan cited prevention as a priority commitment over the coming decade.Yet despi

156、te sickness absence being at its highest since 2004,spending on preventive care accounted for only 7%of government healthcare expenditure in 2020,and was driven mainly by COVID-specific disease detection and epidemiological surveillance29.With the NHS facing immediate challenges,it is always going t

157、o be difficult to pivot any substantial funding towards prevention.If done right,the data brought together under the new SDEs can be used to help improve preventive healthcare without requiring significant additional funding or redirection of NHS spending.Source:BCG Healthcare Data Survey 2023BCG|Ce

158、ntre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data21Use case:To fully capture the potential benefits for preventive healthcare,the SDEsshould allow for integration of wider deidentified datasets with core healthcare data.This should include:Socioeconomic and demog

159、raphic data from tax records and welfare claimsDemographic data from census recordsBehavioural information from consumer behaviour dataLifestyle data from wearables and mobile phonesThere are several specific uses that flow from the integration of health data with wider data,but two that we think ar

160、e worth highlighting:I.Identifying at-risk groups and communities.By using a combination of historical records on disease prevalence in various demographic and socioeconomic groups,medical staff could better target groups and communities at risk of certain diseases and illnesses.This data could pote

161、ntially be used to inform patient lifestyle choices and improve GP monitoring of vulnerable patients.The NHSs Population Health Management(PHM)programme is an example of how integrating public authority information into patient health records has improved how GPs coordinate care for at-risk patients

162、.By partnering across the NHS and other public services,the PHMprogramme has been able to use historical and current data to understand what factors are driving poor outcomes in different population groups.Taking this concept a step further,for example by integrating data relating to lifestyle,has t

163、he potential to build richer patient profiles and move towards achieving personalisation in patient care.II.Improved communication targeting.Data on the response rates of various demographic groups to health-related communications can help medical professionals and policy makers tailor communication

164、 to achieve more effective public engagement.The COVID-19 pandemic showed how varying levels of health literacy among the population impacted responses to health guidelines such as social distancing.Understanding peoples responses could prove powerful if done over time.It would allow different appro

165、aches to be iterated and adjusted as more data is gathered and the effectiveness of various forms of communication becomes clearer.These use cases(using a variety of data to improve prevention of illness and disease)had some of the highest support amongst those we tested in our survey.Indeed,the res

166、ults suggest people may be willing to go even further to share identifiable data if the data were able to yield more granular,individual-level results.When people understand that data can help support improved healthcare outcomes,there are few objections.The success of this use case relies on the in

167、tegration of a wide range of non-healthcare data into the SDEs.This initiative not only unlocks significant research into preventative interventions,but also enables a greater focus on addressing the health equity gap.This is particularly important because individuals who are underinformed or undiag

168、nosed often come from poorer communities that are not as well integrated into society.Imagine your personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?Fig 4.Public attitudes to healthcare data access for prevention

169、use cases77%14%8%1%SupportNeither support nor opposeDont knowOppose76%16%6%2%Help understand my individual likelihood of specific diseases or illnessesEnable improvements in clinical care processes such as screening for,and diagnosing illnessesBCG|Centre for GrowthSource:BCG Healthcare Data Survey 2

170、023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data23BCG|Centre for Growth23Case Study:Local NHS ICSA local NHS Integrated Care System(ICS)had been experiencing challenges surrounding the diagnosis of individuals living with hypertension.Public health data

171、 had shown that on average,28%of adults in the region had high blood pressure.This is a lower figure than expected,suggesting that a large portion of the population might be undiagnosed.Increasing awareness of the issue and encouraging action in at-risk populations such as initiating more regular bl

172、ood pressure testing could make a significant difference.However,initial research showed that whilst individuals were typically open to having their blood pressure measured,resistance was higher in undiagnosed groups due to lack of clarity about the why and how of blood pressure monitoring.Due to th

173、e demographic diversity of the population,addressing this barrier would require more than just simple outreach.To tackle the issue,the local ICS wanted to develop and apply a tailored machine learning model across its SDE to analyse a mix of health and demographic information,and identify people at

174、high risk for hypertension.It took a five-step approach to building the model and embedding it into an ongoing process:1.Combine data from the local ICS dashboards and censuses including information on demographics,comorbidities status and care interactions.2.Employ machine learning tools to detect

175、underlying characteristics and patterns in hypertension patients,and assign risk scores based on these results.3.Identify those areas/groups at highest risk for undiagnosed hypertension by creating a risk ranking system and using it to build a target population.4.Create target demographic cohorts to

176、 most easily identify potential individuals not included in the original data.5.Re-analyse the population on demand whenever new data is incorporated.Through this approach,the local ICS was able to use its model to identify the exact communities it needed to design its hypertension outreach campaign

177、s for,and consequently what elements of a successful campaign would be most applicable.Following on from this,the team can use the model to easily feed in new data as the population evolves.However,challenges around the lack of data integration and availability,particularly on comorbidities and wide

178、r socioeconomic data,drive home the importance of wide data integration.Towards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data2.2.DISEASE PATHWAYSProblem statement:Chronic diseases represent the largest source of mortality and are a significant drain on NHS resources.Chronic disease

179、 is one of the major socio-economic challenges facing the UK today.An estimated 26 million people live with at least one long-term condition(LTC)and 10 million with two or more30.According to the NHS,long-term conditions account for 50%of all GP appointments,64%of all outpatient appointments,and 70%

180、of inpatient bed days,with around 70%of total health and care spend in England attributed to caring for people with LTCs31.In 2021,this figure amounted to 60 billion,a growth of 4.4%since 202032.Compared to its peers,the UK has higher avoidable mortality rates,including cancers which can be prevente

181、d and/or treated33.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data24With this in mind,advancing research into disease has been identified as a key priority for the UK.In 2022,a 1 billion investment backed by the UK government was made in a bid to accelera

182、te research into conditions such as cancer and heart disease,as well as to support the ambition of establishing the UK as a science superpower34.The COVID-19 pandemic highlighted to policymakers,the private sector and the public why it is vital to understand the picture across the disease pathway th

183、e fundamental causes of the disease,how it is transmitted,what the best treatments are,and how different patients respond to different treatments.If done right,the data brought together under the new SDEs can be used to help improve understanding across disease pathways without requiring significant

184、 additional funding or redirection of NHS spending.Use case:Fully integrate the widest range of healthcare data into SDEs to facilitate understanding of disease pathways.To fully capture the potential benefits for better understanding of disease pathways,SDEs should bring together a wide range of he

185、alth-related data,including:Social determinants of health(as discussed above)to inform prediction and primary prevention(i.e.preventing onset).Early biomarkers to inform secondary prevention(i.e.reducing impact of a disease)for silent diseases(e.g.cardio-metabolic disease).Multimodal health data(gen

186、etics,health records,medical imaging,wearable sensors etc.)that could enable patient subtyping and personalised treatment options.Alongside this,there should be a focus on prognosis analysis to enable more effective,focused,and higher-value care.This integration of a wider variety of data can have s

187、everal specific applications and benefits:Understanding the biology behind disease intervention to offer more personalised treatments.Capturing and analysing the full range of data relating to a specific disease treatment will make it easier for researchers and medical care professionals to understa

188、nd unique response profiles.For example,whilst genomic profiling,liquid biopsy data,and polygenic risk scores are all examples of data that can now be used in clinical and research settings,the integration of these distinct types of data remains challenging.Combining data like this with electronic h

189、ealth records,imaging data and wearable sensor data could get us closer to a true understanding of each persons biological uniqueness,how it interacts with their vulnerability to disease,and how they respond to treatments.In turn,this enables the development of individualised preventative,diagnostic

190、,and therapeutic strategies.AI is likely to be a critical part of the solution here and this is explored further below.A majority of respondents supported their data being accessed via an SDE if it helps to further the understanding of disease and improve treatments.BCG|Centre for GrowthTowards a He

191、althier,Wealthier UK:Unlocking the Value of Healthcare Data25Fig 5.Support for data access to help treat diseasesImagine your personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?71%19%8%2%SupportNeither support nor

192、opposeDont knowOpposeMore accurate mapping of disease pathways.Studying and linking disease data from pre-diagnosis to early symptom detection to treatment within a care system can help build a richer picture of how diseases develop.The Newborn Genomes Programme run by Genomics England is an example

193、 of how this could work.With a goal to map the genomes of 100,000 newborns,it aims to understand how diseases start in children,and evolve over time.Extending this concept to a wider population could see previously unidentified disease trends arising from different stages of the human lifecycle,or a

194、s a result of life events.This could further feed into developing greater knowledge of when and how best to prevent disease development and progression amongst at-risk populations.This type of disease pathway mapping is currently the exception and limited to certain diseases.With the development of

195、the national and subnational SDEs,it is important that it now becomes the norm.It should aim to build up detailed understanding across a wide variety of diseases,without the need for individual or bespoke SDEs.Getting it right the first time will avoid extra costs and complications down the line.2.3

196、.CLINICAL TRIALS Problem statement:Clinical trials are the building blocks of health innovation,but the UK is rapidly falling behind peers,and risks missing out on the wide-reaching benefits.Clinical trials provide an opportunity to get early access to new interventions and are integral to improving

197、 patient care and addressing health inequalities.They benefit the NHS more widely;greater clinical trial activity is correlated with reduced mortality and better clinical Care Quality Commission(CQC)ratings in NHS ICSs.Clinical trials also provide a much-needed source of revenue for the NHS.In 2018/

198、19,commercial clinical research generated income of 355 million and cost savings of close to 30 million for the NHS in England35.While the case for a healthy clinical trial ecosystem should always centre around the opportunity to improve patient outcomes,the benefits go beyond health.In 2020,the lif

199、e sciences industry accounted for over 5 billion of pharmaceutical R&D36and generated 270,000 jobs37.Comparing any treatments Im given with how others respond,to help researchers understand how to treat specific diseases betterSource:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Heal

200、thier,Wealthier UK:Unlocking the Value of Healthcare Data26Fig 6.The UKs declining performance in clinical trials#of clinical trial sites per m population for phase II/III trials(2017-2022,CAGR in%)1The UKs trial decline was reflected in the number of trial sites per capita with 18%YoY decrease31713

201、2121998077410481675838285-20%-9%-11%-10%-14%-18%+5%20172022CAGR 17-221.Compound Annual Growth Rate starting data from 2017 until 2022.Source:Evaluate Pharma;BCG analysisInvestment in clinical research represents the highest return on investment for any public service:every 1 the government spends on

202、 clinical research generates 19 of total economic returns38.However,as addressed in the recent clinical trials review led by Lord OShaughnessy,the UK is becoming a less and less attractive place to conduct clinical trials.Since 2017,difficulties recruiting patients have driven a nearly 50%decline in

203、 phase III trials per year39.From 2017-2021,the UK dropped from second to sixth for phase II trials and fourth to tenth in phase III trials in the global rankings.Good performance in trials especially late-stage research where treatments are closest to market is vital to fully reap the benefits of c

204、linical research.Whilst most countries have bounced back from the decline in non-COVID-19 clinical trials over the pandemic,the UK appears to be falling further behind.Research from the Association of the British Pharmaceutical Industry(ABPI)has shown that declining clinical trial activity caused a

205、deficit of 447 million for the NHS in 2020/202140.Regulators are at capacity and red tape is slowing down companies in long-winded processes.It now takes 60%longer in the UK than in the US to set up a clinical trial.The median time between first application to a regulatory authority and the first pa

206、tient receiving a first dose in a clinical trial was 247 days in 202041.Also,just half(54%)of open studies performed in the NHS are delivered on time and on target42.Cumbersome and slow recruitment processes as well as lengthy approvals hurt the UKs reputation as an attractive place to conduct clini

207、cal trials.The average time for MHRA assessment of clinical trials was reported at 125 days for first review of phase 1-4 patient trials in May 202343,up from 32.2 days a year earlier44.This has significant knock-on impacts for the UKs comparative advantages in life sciences.BCG|Centre for GrowthTow

208、ards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data27Use case:Use data to improve the process of setting up and recruiting for clinical trials in the UK.Setting up and running clinical trials can be laborious,complicated,and expensive.Evidence from early AI programmes has already su

209、ggested that AI-driven R&D could result in time and cost reductions of at least 25-50%for drug discovery45.As technologies mature and implementation becomes more widespread,impacts will likely get more consistent and significant.Combining data from NHS health records with health information such as

210、genomics data to create integrated datasets on SDEs would allow researchers and funding bodies to build a more detailed picture of the UK population.These datasets could then be combined to help accelerate clinical trial setup and improve cost-effectiveness in several ways:I.I.Develop a clinical tri

211、al concierge service Develop a clinical trial concierge service to quickly determine whether a particular trial is feasible.Of publicly funded randomised controlled trials(RCTs)between 2004-2016,only 56%achieved their target sample size46.For every clinical trial that fails to recruit sufficient par

212、ticipants,time and money is wasted and new treatments or insights are further away.A concierge service that can rapidly analyse patient-level data to assess whether the required sample size exists and is achievable could help overcome this issue.This would require building a platform that sits acros

213、s an SDE or several SDEs,and covers health records,ethnicity,location,relevant social and lifestyle factors,and imaging records.Researchers could use the platform to submit queries relating to their desired trial protocol to understand if and where such populations exist and get indicative costs and

214、 timings of recruitment.For maximum utilisation,the service should enable a drill down to evaluate potential participant pools at each proposed location within a clinical trial.Data/research experts would also be required to assess the reliability and validity of insights to provide additional conte

215、xt.The NHS DigiTrialsservice uses routinely collected NHS data to provide an estimate of how many patients currently meet eligibility criteria for a trial,and where they are located.However,as this service is limited to selected secondary care data in England,an optimal approach is needed at scale.O

216、ne option would be to expand the DigiTrials to a wider set of data to provide a concierge service.An alternative option is to leverage Clinical Practice Research Datalink(CPRD)data.In one trial(DaRe2THINK),CPRD primary care data was linked with secondary care data and death records.An algorithm was

217、used to filter the GP records to identify how many matched eligibility criteria,without disclosing who they were.II.II.Explore sensitivity of inclusion/exclusion Explore sensitivity of inclusion/exclusion criteria for clinical trial participants.criteria for clinical trial participants.Having used a

218、 concierge service to identify the size and location of potential participant pools,the next step would be to incorporate the ability to use historical clinical trial data to understand how adaptations to eligibility criteria could likely improve enrolment rates.Enrolling enough eligible participant

219、s is a significant challenge for clinical trials in the UK.Significant advantages could be gained from AI algorithms that analyse information on past clinical trials,regulatory filings and patient data including biomarkers,genomic,and imaging data to understand the impact of small changes in partici

220、pant criteria.This analysis requires a register of UK clinical trials activity and their inclusion criteria(as called for in the OShaughnessy review)as well as data indicating their success,and whether sufficient participant numbers were reached.This would require building a platform on the SDEs tha

221、t can determine where,how,and why other clinical trials did or did not succeed,so researchers could optimise the study protocols at the outset.These AI technologies could reduce trial costs,improve access(especially to historically underrepresented groups),and increase trial success rates.BCG|Centre

222、 for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data28III.III.Reaching eligible participants.Reaching eligible participants.The concepts above will make identifying pools of prospective participants easier,but they will only have the desired impact on speeding up clinic

223、al trials if it is also possible to reach them.Currently,there are barriers to contacting potential trial participants,such as the challenge of seeking consent to contact.As called for in the OShaughnessy review,greater consideration of how it can be made easier for research organisations to reach p

224、otential participants is needed.In the DaRe2THINK trial,GPs were informed if a local patient was eligible for the trial and asked to reach out and gain consent for the researchers to make contact.Whilst this is a promising improvement,this process relies on GPs having the capacity to make contact wi

225、th eligible participants.Moving forward,there is a significant opportunity to leverage the NHS app,such as giving the public the option to opt-in for clinical trial notifications to allow for improved communication.In our survey,we found that 62%of respondents supported using healthcare data via SDE

226、s to improve clinical trials recruitment and clinical research.A further 24%neither opposed nor supported the idea,so could yet be convinced.However,the survey pointed to no obvious approach that would meaningfully shift their view at this stage.Fig 7.Support for data access to help treat diseasesIm

227、agine your personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?62%22%14%2%SupportNeither support nor opposeDont knowOpposeHelp identify eligible participants in clinical trials to speed up clinical researchSource:BC

228、G Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data292.4.CLINICAL CAREProblem statement:The NHS is facing significant pressures,with backlogs reaching an all-time high.This has resulted in significant knock-on effects on the healt

229、h and wealth of the nation.As of April 2023,one in eight people in England 7.42 million are waiting for treatment47.Of this group,3 million have been waiting more than 18 weeks.The target for 92%of patients to be seen within 18 weeks has not been met since 2016 in England and currently stands at 58.

230、5%48.Although long NHS waiting times pre-date the pandemic,COVID-19 significantly exacerbated the problem.The average waiting time for treatment in England today has almost doubled from pre-pandemic levels to 13.8 weeks49.To add to this,the UK has fewer doctors and nurses per person than many of its

231、 peer countries50.NHS services across the board are being stretched.This has wider economic costs.NHS backlogs have contributed to a significant rise in economic inactivity since the pandemic.Of the over-50s who left the workforce since the pandemic,over a third are on an NHS waiting list.The same p

232、roportion say a health condition is the reason they havent returned to work.It is estimated that there are 73 billion worth of combined benefits over the next five years if the NHS can get people off waiting lists by 202751.This includes 18 billion through people returning to work or increasing thei

233、r working hours.The UK is well placed to address these issues by harnessing its comparative global advantage in AI and tech.Positive first steps in this area have been made through the establishment of AI centres such as the NHS AI Lab and the London Medical Imaging and AI Centre for Value Based Hea

234、lthcare.However,these initiatives need to be scaled up,both to increase the work on imaging and pathology use cases and to exploit the wider potential for speeding up administration.Scaling high-impact AI innovation in the UK is hard to achieve with the current health infrastructure.Establishment of

235、 SDEs and an FDP will help with this but it is important to have a foundational system that new AI technologies can all plug into.The NHS does not currentlyhave the breadth and scale of data skills needed to build,deliver and maintain this.It is therefore paramount to develop these innovations in pa

236、rtnership with expert external organisations.There is no single solution,but better use of health data could help services run more efficiently and improve patient outcomes.This means accelerating the delivery of data-driven technologies that can streamline clinical processes,facilitate better decis

237、ion-making and reduce inefficiencies across the system.NHS trusts that are digitally mature have been shown to be 10%more efficient52.Use case:Leverage new technologies,including machine learning,generative AI and AI-driven algorithms,to optimise clinical care decision-making and resource management

238、 in the NHS.There are two key areas in which health data can be used here:I.Diagnosis.Targeted efforts to diagnose patients more quickly and accurately will have positive knock-on impacts on waiting times and NHS services.There have been huge developments in AI diagnostics over the past decade,but t

239、he NHS must accelerate deployment of these technologies to see widespread impacts.AI and machine learning can analyse patient health records to identify previously undetected patterns in diseases.The NHS should build on the work done with the COVID-19 Chest Imaging Database and establish a nationall

240、y-available platform that integrates diagnostic imaging data with wider health records.At first,this should be developed for the highest-priority areas such as cardiovascular,respiratory and neurological diseases,and cancers,to test proof of concept before being rolled out further.AI algorithms can

241、then be used to interpret images and flag the presence of disease indicators immediately,without the need to wait for a radiologist to make an initial assessment.This would allow clinical teams to rapidly triage cases and focus resources on the highest priorities from the outset.BCG|Centre for Growt

242、h30Case Study diagnosis:COVID-19 Chest Imaging DatabaseDuring the pandemic,NHSX,with the support of the British Society of Thoracic Imaging and Royal Surrey NHS Foundation,built a national centralised database of chest images and supporting medical information.The aim was to use this data to develop

243、 machine learning technologies that would support better research,diagnosis and treatment of COVID-19.The database was used to develop:AI image processing software that was able to support clinicians in diagnosing COVID-19 quickly.Mathematical modelling to help determine the severity of disease and

244、what interventions may be necessary,e.g.likelihood of needing ventilation.Validation of AI products verifying whether AI tools that have been developed on non-UK populations are fit for purpose in the UK.Teaching resource for radiologists:supporting radiologists to diagnose COVID-19 cases after exam

245、ining chest images and to receive feedback on their conclusions from the AI software.The database contained over 60,000 images from nearly 30 NHS Trusts across England and supported the work of 16 research groups.The COVID-19 Chest Imaging Database provided researchers with large,high-quality data t

246、hat was instrumental in supporting clinical responses to the pandemic.The database also provided a valuable proof of concept and acted as a testbed for clinically viable medical imaging models.The data has already been incorporated into several tools,including:An open-source AI tool to facilitate ra

247、pid diagnosis and triage of patients with COVID-19,led by the Cambridge University NHS AIX-COVNET collaboration.A simple but accurate risk calculator(LUCAS)to predict survival of COVID-19,for which inclusion of Chest Imaging data increased the accuracy of the prediction.Towards a Healthier,Wealthier

248、 UK:Unlocking the Value of Healthcare DataII.Treatment.Data tools and AI can also be used to support better decisions around clinical treatments.By combining end-to-end patient data,including genomics and clinical research data,AI algorithms can suggest treatment options,flag potential side-effects

249、and identify contraindications at the patient and population level.For example,by capturing and storing all data from biopsies in suspected cancer cases on SDEs,it is possible to train AI algorithms to suggest the most effective treatment pathway based on an individuals biomarkers and how previous p

250、atients have responded.This could support clinicians in making much quicker treatment decisions as well as improving the efficacy of interventions.Beyond these examples,generative AI could be potentially transformative for wider service management,including administrative tasks and workforce plannin

251、g.We look at these in more detail in Chapter 3.In our survey,support for using data to improve clinical care was probably the most mixed,albeit still strongly positive.Using personal health data for direct improvements to clinical care processes such as diagnosis and screening at hospitals had stron

252、g support.Leveraging data to help improve and better target staffing/recruitment as well as the building of healthcare infrastructure had less support,with larger numbers of respondents neither opposed nor supportive.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Health

253、care Data31Fig 8.Support for data access to improve clinical careImagine your personal health data was made accessible on a secure platform.For each of the following,would you support or oppose your data being used?76%16%6%2%Enable improvements in clinical care processes such as screening for and di

254、agnosing illnesses52%27%3%18%Enabling the government to understand where to build new medical facilities and how best to utilise existing ones58%24%15%3%Help hospital and medical staff recruitment according to which services have highest needSupportNeither support nor opposeDont knowOpposeCase Study

255、 treatment:An AI tool for cancer that identifies the best targeted treatmentsA US technology company developed an AI tool that could analyse a wide range of tumour types to provide detailed genomic profiling.This facilitates the use of precision oncology interventions that target the molecular chara

256、cteristics of an individuals tumour.In a study,the tool analysed 500 individual cancer patients clinical and molecular data,whole RNA sequencing and immunological biomarker measurements.This individual molecular profiling was then used to match patients with the best cancer therapies or clinical tri

257、als.The tool was found to lead to substantial improvements in the identification and accuracy of mutations and reducing false positives.The AI technology also resulted in:92%of patients being matched to precision treatments.Over three quarters(77%)of patients were matched with at least one relevant

258、clinical trial.This technology supports clinicians in making much quicker treatment decisions that are tailored to individual patients to maximise efficacy and impact.This is particularly important in oncology,where speed of intervention is strongly linked with patient outcomes.This tool is also esp

259、ecially valuable for patients with advanced or rare subset cancers that are more complex to treat.Source:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data32Implementation factorsWhen it comes to implementing the SDEs and the w

260、ider data approach,several factors need to be considered if we are to have a chance of achieving these use cases and maximising the value from healthcare data.Chapter 033.1.DATA TRANSPARENCY AND PUBLIC ENGAGEMENT Transparency and trust are prerequisites.The right frameworks and mechanisms must be in

261、 place to deliver the level of transparency and information that will maintain public trust over time.This is easier said than done,and there have been missteps in the past,such as the failed rollout of the GP Data for Planning and Research programme(see page 34).But given the opportunity and need,i

262、t is crucial to get it right this time by listening to what the public say,learning from past mistakes and drawing on what already works well.Fortunately,we start from a relatively strong place,with 90%of people saying they are willing to have their data accessed by the NHS for any reason.This shows

263、 the high levels of trust the institution has with the public when it comes to handling and processing data.For some time,there has also been a misconception by stakeholders across the value chain,especially private organisations,that the publics default position is to oppose the sharing of their pe

264、rsonal health data.This has meant many organisations have shied away from engaging with the public in conversations around personal data.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data33Do you support or oppose sharing your personal health data with the f

265、ollowing for any purpose?There is huge support for sharing personal health data with the NHS;and more support than opposition for all other organisations,apart from tech companiesFig 9.Support for sharing data with different organisationsHowever,our results show that when you engage with people and

266、set out the use cases and their potential benefits,they tend to be supportive of allowing their data to be accessed.Those who responded neither support nor oppose to the question“Do you support or oppose sharing your personal health data with the following for any purpose?”(Fig 9)were disproportiona

267、tely more likely to answer other questions this way,which may indicate a group of people who would benefit from further information to help them form an opinion.This also suggests there is a group that is unlikely to have strong views and may either be able to be convinced or would not strongly oppo

268、se data use.Linked to this is an assumption that,given the choice,people may prefer to opt-in rather than opt-out of data sharing.However,our survey suggested that there is no clear majority either way:52%of respondents supported opt-in compared to 48%for opt-out.As might beexpected,people favouring

269、 opt-out tend to be more comfortable with sharing health data.For those on the opt-in side,there are steps that could make them more comfortable.For example,these respondents were more likely than the full sample to request being proactively told about their use of data(44%vs 37%).Detailed informati

270、on on when and how their data is used could therefore help to convince this group.Past mistakes should not be ignored either.When public engagement is an afterthought,perceptions of transparency plummet and public trust takes a direct hit as in the recent attempt to launch GP Data for Planning and R

271、esearch(GPDPR).There should be a clear effort to be open about what lessons have been learnt and how processes have been adapted.In fact,there should be a joined up public engagement strategy consistently adopted across all NHS data projects.This would help to maintain a coherent approach to buildin

272、g and maintaining public trust.90%41%39%38%33%13%7%29%31%31%32%27%3%5%29%28%29%30%58%NHS1%Pharmaceutical companies2%Central government2%Academic institutionsLife sciences companies2%Tech companiesSupportNeither support nor opposeDont knowOpposeSource:BCG Healthcare Data Survey 2023BCG|Centre for Gro

273、wth34Case Study:GP Data for Planning and Research(GPDPR)stoppedIn 2021,NHS Digital tried to launch the GPDPR a programme that would give researchers and third parties access to pseudonymised GP data to analyse and improve healthcare planning and research.GP data is some of the richest and most compl

274、ete in the NHS,but it is highly fragmented and difficult to extract under the current system.GPDPR aimed to improve data quality and access in a cost-effective way.However,a significant lack of public engagement and communication led to serious concerns being raised from the public,patients,and prof

275、essionals.As acknowledged in the governments Data SavesLives strategy,the NHS failed to articulate the context and therefore the value of GPDPR,and did not sufficiently listen or engage with the public throughout.The result was widespread confusion and a perception that the NHS was intending to forc

276、e the programme through without public support.As a result,the rollout of GPDPR has been stopped indefinitely whilst the government looks into completely redesigning it.Public trust in data sharing has been badly damaged and more than a million patients opted out of data-sharing afterwards.Towards a

277、 Healthier,Wealthier UK:Unlocking the Value of Healthcare DataAs part of this comprehensive public engagement strategy there should urgently be a public communications campaign around healthcare data usage and its potential benefits,particularly linked to the process of creating the FDP,national SDE

278、,and sub-national SDEs.Our survey provides a few potential areas for focus in this campaign:Emphasis on the move to data access over sharing.Clear outcome-based use cases.Explanation of the wide range of benefits that better use of healthcare data can have.Clear messaging on how value and benefits w

279、ill be put back into the local healthcare system.Focus on building trust for certain institutions and partners(e.g.have pharma and tech companies sign up to a set of terms,including ethics principles).This final point is worth expanding on briefly.There is a particular issue around allowing tech com

280、panies access to public healthcare data.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data35Do you support or oppose sharing your personal health data with the following for any purpose?Fig 10.Support for sharing data with tech companiesWe tested the above q

281、uestion at the beginning and end of our survey.We found that 45%of respondents were unchanged in their views on sharing health data with tech companies,while 29%of respondents were more opposed to sharing health data with tech companies at the end of the survey.Concerns are also consistently much hi

282、gher amongst older people.Part of the concern may be driven by the fear that tech companies would simply sell the data on.When asked about what different organisations currently do with healthcare data,23%said they believe tech companies sell it to third parties.The highest from other organisations

283、was 11%.Making it clear that this isnt an option under a data access approach will be important.There should be clear communications around who will be accessing and processing data from the SDEs.Given that tech companies are likely to be involved in the practical side of building these SDEs,it is i

284、mportant for the NHS to start communicating this now and in the wider context around healthcare data.In order to maintain transparency and trust in the long term,it is essential to establish some clear frameworks for how the NHS should engage the public in decisions regarding the access and use of t

285、heir data.It is vital the public have a stake and a say in the decision-making process.We have identified several options for how this could be done with the intention being that these are led centrally by the NHS.They are not mutually exclusive.Citizen summits.Temporary panels made up of members of

286、 the public are established to advise stakeholders from across the value chain on how the public should be engaged throughout a specific project.Advice is then used to form the public deliberation and governance structures needed throughout the works lifecycle.Citizen summits can be used to develop

287、public deliberation charters,and the terms of engagement to which stakeholders sign up.Typically,they are used in a multi-stakeholder setting,but could also look at public deliberation requirements for a single organisation.If used,citizen summits should be the first major public engagement step in

288、the lifespan of a project.13%29%58%2%SupportNeither support not opposeDont knowOpposeTech companiesSource:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data36 Public decision panels.Organisations that want to use personal healt

289、h data must get the approval of a decision panel also known as a participant panel that is made up of members of the public.These panels should have a say in what data the organisation uses and how.Panels should be able to influence the organisations research and data use priorities and should be fu

290、lly embedded in senior decision-making mechanisms.Panels should meet at least quarterly,and membership should be sufficiently long(e.g.years not months)to allow members to fully embed into the organisations activities and provide consistency.National citizen jury.A randomly selected public panel,whi

291、ch is independent from any organisations involved,offers advice on major national initiatives using personal health data,but does not provide explicit approvals.Jury members should have personal lived experience of the topic/disease areas.They should be nationally representative and from geographica

292、lly diverse areas.Juries can be stood up relatively quickly and be used to advise on specific projects,typically in a sprint style,where they assess a particular topic over a matter of days not months.Other public engagement methods.There are several other public deliberation tools that can sit with

293、in,alongside or separately to summits,panels and juries.For example,dedicated focus groups can be used to seek advice or make decisions on long-term strategic priorities as well as specific topics.Online forums can help broaden access and get perspectives from a diverse audience.These are also usefu

294、l for understanding attitudes in response to current affairs,or for tracking sentiment over time.Members of public participation groups should always reflect the communities which they serve.As the context evolves,organisations need to continually assess whether they have the right representation an

295、d actively seek to recruit members in response.For example,if an organisation launches a new clinical trial in a specific disease area,they should recruit participants that have lived experience of that disease.The appropriate size of participant groups is dependent on the situation.Groups should be

296、 sufficient to reflect the populations wide interests,but not so distorted they lose the ability to make decisions or converse effectively.We tested some of these options in our survey and found that they can play a useful role in making people more comfortable with their data being accessed and use

297、d.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data37For each of the following,please say whether it would make you more or less comfortable about your health data being collected and accessed.Data usage registers and public decision panels would make peopl

298、e more comfortable about their health data being collected and accessedFig 11.Views on public engagement toolsData usage registers there is a publicly available record of every time the NHS grants external organisations access to personal health data.Public decision panels if any organisationwants t

299、o use personal health data,they must get the approval of a decision panel who report to the organisation but are made up of members of the public.Public communications widely available public-facing materials that explain what data is being used for are shared.For example,leaflets in hospitals,schoo

300、ls,and GP surgeries,or adverts on TV.National citizens jury a randomly selected public panel,which is independent to healthcare organisations and who provide advice on any major national initiative using personal health data,but dont provide explicit approvals.12%10%7%6%35%32%29%23%6%5%6%5%11%9%10%1

301、1%13%13%15%15%13%17%18%22%10%14%15%18%Data usage registersPublic decision panelsPublic communicationsNational citizens jurySignificantly more comfortableSomewhat more comfortable Wouldnt have an impact-Id still support my health data being usedDont knowWouldnt have an impact Id still oppose my healt

302、h data being usedSomewhat less comfortableSignificantly less comfortable Source:BCG Healthcare Data Survey 2023BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data38Public decision panels and data usage registers(which allow the public to track and view how da

303、ta is being used)provided the most comfort.Whilst data usage registers already exist,they are currently poorly signposted and hard for the public to navigate.Adopting a more proactive,potentially personalised,usage register model would have greater impact.As Genomics England has shown,involving publ

304、ic decision panels in decision-making and strategy can work at a practical level.We therefore believe it is important that over time,public decision panels are incorporated into the oversight of the SDEsand the NHSs wider data strategy.Engagement should not be static.Organisations should revisit con

305、versations as the context evolves and update consent whenever necessary.Feedback loops should be built into the projects design to ensure people can share their views,advice,and experiences not just at the beginning but after work has concluded,as this is where feedback is vital to capturing lessons

306、 learnt.Technology can be used to facilitate this,for example through the NHS app.Although its functionality is currently limited,broadening the apps use will encourage more engagement from existing users and downloads from future users.For example,using machine learning analytics,the app could be u

307、sed to push out notifications to individuals when they are eligible for clinical trials or screening(s)based on their health history.Automatic feedback requests after users have consented for their data to be used could help embed a virtuous cycle of participant engagement.This is also where data us

308、age registers could be incorporated.Whilst they are already in use for the SDEs,these could be made more accessible via the NHS app and linked to individual data so a person can track how their own data is being used.When we asked people about the level of information theyd like to receive,views wer

309、e mixed,but showed a broad desire to have some information.In the app,individuals could choose how often they wished to be updated on how their data was being used.Imagine your personal health data was being collected for a legitimate purpose and was subject to strict privacy and security standards.

310、How much information would you like to know about how your data was being used?Nearly four in 10 people would like to be proactively told about the use of their data as soon as it is usedFig 12.Views on receiving information about use of dataC:Id like to be told proactively about the use of my data

311、as soon as data is usedB:Id like to be able to request information about the use of my data,but I dont want to be told proactivelyA:I wouldnt want any additional details-Im content knowing data was collected for a legitimate and valuable purpose21%36%6%37%ABCDont knowSource:BCG Healthcare Data Surve

312、y 2023BCG|Centre for Growth39Case Study:Genomics England participant panelGenomics England established a participant panel comprising members of the public whose personal data or that of a family member is held by the company.The panel was set up so Genomics England could get regular guidance and ad

313、vice from the public on how they should use personal data and how research needs to be designed to maximise patient benefits.The panel is made of up a diverse group of 15 to 25 people.Each member is tenured to the panel for three years,with an opportunity to extend for a further three years with the

314、 permission of the panel chairs.Panel members meet quarterly and are expected to spend one extra day on panel business every quarter.The panel represents the interests of all individuals whose data is used by Genomics England.Panel members bring their lived experiences and perspectives to decisions

315、around how the company collects,accesses,and uses data.They influence decisions about which external parties can use theirdata,and how they can use it.They also provide advice on what the companys research and strategic priorities should be.The panel directly advises the companys board and contribut

316、es to its ethics advisory committee and commercial team.When required,the panel stands up special groups whose remit is to investigate specific topics,for example COVID-19 and cancer.Participants also help inform the wider genomics value chain,including the NHS,about healthcare service delivery and

317、other genomics projects.The panel,which has now been successfully running for eight years,has been involved in countless projects and shaped the everyday thinking and decision-making of Genomics England.For example,when the company was struggling to secure initial genomics data,the participant panel

318、 wrote a letter on behalf of all participants to the data owners,articulating the value of this data.Within 24 hours,the company had secured a data agreement that granted the company access to over 3.8 billion data points from 90,000 people.Towards a Healthier,Wealthier UK:Unlocking the Value of Hea

319、lthcare Data3.2.DESIGN AND OPERATION OF SDESIt is vital that SDEs,the wider data network,and the process of collecting data,are as effective and efficient as possible.The SDEs currently being established at the regional and national level are in their early stages.But there are a few important point

320、s to note to ensure the most value can be captured.An important balance to strike will be ensuring there is sufficient commonalities across SDEs to enable ease of use and data integration,whilst also ensuring there is space for healthy competition between SDEs for their tools,services and talent.Acc

321、essibilityThe Goldacre Review originally envisaged that the use of Trusted Research Environments(TREs),such as the SDEs,would allow for a significant streamlining of the data access process,stating:“TREs use should also be incentivised by developing a two-track approvals process,with far quicker acc

322、ess to data in a TRE,reflecting the reality that data privacy concerns are largely eradicated by this working practice.”As it stands,every request for access to an SDEmust go through the NHS Data Access Request Service(DARS)and be examined individually before a bespoke Data Sharing Agreement can be

323、created and access to the SDE granted.Parts of this process were clearly designed before the creation of the SDEs.For example,every application must set out security assurances with regards to data handling,storage and processing and explain the flow of information and data.These factors are largely

324、 irrelevant when working in an SDE given the security and operating parameters,by design,stop the data being stored or processed anywhere else.If researchers want to remove any code,data,or results from the SDEthis must be done via the SDE Safe Output Service.This is used to ensure any assets taken

325、out of the research environment conform to mandatory data confidentiality and privacy rules.BCG|Centre for GrowthTowards a Healthier,Wealthier UK:Unlocking the Value of Healthcare Data40Given the additional security that SDEs offer,the current accessibility system particularly around accessing SDEs

326、initially looks somewhat outdated.Instead,the NHS should pursue a more streamlined approach.This would mean updating the SDE access process to reflect the safety and operating context of SDEs,reducing bureaucracy and administrative burden for DARS users and the NHS.The focus should instead be on ver

327、ifying that anything removed from the SDEs is compliant to the highest security and privacy standards.Ensuring the Safe Output Service can be efficiently scaled with sufficient resource will be crucial for this.There is also a case to review the necessary purpose and benefits of access.As it stands,

328、these are set out in the Care Act 2014,which never really envisaged the type of data access via SDEs that is now being pursued.Applicants have to make the case for how their request will fit this purpose,and benefit the health and social care system.This could be made broader to capture wider potent

329、ial benefits to the UK economy from innovation,with plans for ensuring benefits are captured by the health system also put in place.User experienceAs the various NHS SDEs develop,it will be important to encourage consistent practices to avoid duplicative effort and provide a standardised experience

330、for users when it comes to the initial approvals and basic administrative processes.One crucial factor will be to create a service wrapper that provides all NHS SDEs(national and sub-national)with the same basic governance and administrative processes.For example,applications for permissions,require

331、ments for approval,and management of the users accessing the data.The governments current intention is that researchers will interact with a single Data Access Committee to apply for access to data for each sub-national or national SDE.However,there is an open option to delegate authority to individ

332、ual SDEs in future.Whilst local knowledge of the data is undoubtedly valuable in consideration of applications,approaching multiple committees to access different data sets will be laborious and deter researchers who are interested in using data from across the UK.Given the need to apply for a uniqu

333、e data agreement for each purpose,the inconvenience will quickly multiply if several committees for each purpose need to be engaged.Greater integration across SDEs should be accelerated to ensure use of the data is an attractive pursuit.Interoperability is also a key part of providing a quality user experience.Whilst some collaboration is happening,the creation of the FDP,national SDE and sub-nati