Understandingpublic expectationsof the use of healthand care dataJuly 2019Authored by:Developed in consultation with:Commissioned by:
Understanding public expectations of the use of health and care dataForewordUnderstanding Patient Data is delighted to welcomethis timely report, which provides detailed insights intowhat is known about people’s expectations and attitudesto the use of health and care data. It offers a uniquecontribution to our knowledge and understanding, thatwill be critical in ensuring that OneLondon and otherLocal Health and Care Record Exemplars (LHCRE)build meaningful engagement and involvement of theircommunities into their plans right at the outset.From our perspective, one of the most powerful insightsfrom this report is the profound impact that clarityand transparency can have on people’s views andexpectations. Transparency can mean different thingsto different people but boils down to “do what you sayand say what you do”. It is a cornerstone of building atrustworthy system that people can scrutinise and getclear, meaningful, consistent answers to questions andconcerns they may have.While the local health and care record is undoubtedlycomplex to implement in practice, there should be nobarrier to providing straightforward and comprehensiveanswers about why, by whom and how patient data iscollected, managed, protected and used. Ideally thiswould be informed by meaningful engagement withpatients and publics as those with rights and interestsover the data. The push for transparency can alsoshed light on tricky issues that decision-makers needto be publicly accountable for, such as the balancebetween local and national-level benefits and what rolecommercial organisations can or should play in usingdata to improve care and services.The report cites that previous engagement and researchhas tended to focus on perceived benefits and risks ofdata access and use, but has yet to explore how publicsmight balance these within the constraints of how healthsystems and research operates in practice. Explorationof such trade-offs would be a hugely useful next step indeepening our understanding of how public institutionsbuild trust and confidence with their local populations.It is striking that little attention has been paid to date onpeople’s views of data use for service planning, giventhat this is a major area of potential for improving theefficiency, effectiveness and operational functioning ofhealth and care services. There may be ethically difficulttrade-offs to make here, between the rights and interestsof individuals, communities and the health service, so it isNatalie Banner, Lead at Understanding Patient Dataimportant for OneLondon to further explore what people– patients, publics and health professionals – consider isreasonable in these contexts.The report also surfaces significant gaps in ourunderstanding of people’s views, most notablyaround the perspectives of minority and marginalisedgroups. Given the diversity of London’s population,this is concerning as it suggests there are significantcommunities or groups whose attitudes and expectationsabout data use are invisible to decision-makers. Somegroups may have good reason to feel distrustful ofthe health and social care system and be inherentlyconcerned that data about them could be used to targetor discriminate against them. It will be imperative forOneLondon to think carefully about how to reach andwork with these seldom-listened to groups if it is tocreate a LHCR system that serves all Londoners fairlyand equitably.The findings also reveal a healthy degree of scepticismamong publics about whether the proclaimed benefitsof better data use are actually realised in practice. Itis incumbent upon those managing and using data todescribe a clear trajectory from the collection of datato delivery of benefits. Without this, the public will haveevery reason to question whether the case for using databeyond individual care really stacks up.2
Understanding public expectations of the use of health and care dataForewordWhile research purposes are not the central focus ofthe OneLondon LHCRE programme, they will be vitalto explore as part of the patient and public engagementwork. Improvements in care often do depend on research,whether into demographic differences in diseases, drugsafety monitoring or learning about the biological riskfactors for different conditions. Research is critical to thedevelopment of learning health systems; we should not shyaway from engaging with patients and publics about this ifwe are to create more responsive services that better meetthe needs of patients and the health and care workforce.This report makes for essential reading for all those involvedin the development of the LHCRE programme, both atlocal and national level, and for other programmes andorganisations that manage and use patient information.Many people talk about the importance of public trust asessential for underpinning exciting new innovations in dataintegration and use. Trust can only be earned, and thatstarts with understanding what people think, want andexpect. This report shows us the steps that need to betaken to put the rhetoric on trust into practice and maketrustworthy care record systems a reality.Natalie Banner,Lead at Understanding Patient Data3
Understanding public expectations of the use of health and care dataOneLondon responseResponse from OneLondon Local Health andCare Record ExemplarLocal health and care systems across London areworking together - as part of the OneLondon programme- to improve how health and care services are deliveredand experienced. In part, this is about making health andcare information more consistent, more joined-up andmore available to the clinicians, patients and families whoneed it.As one of the country’s first Local Health and CareRecord Exemplars (LHCREs) - designated by NHSEngland - OneLondon is helping to meet Londoners’expectations of a 21st Century health and care system.There are significant benefits to be realised from joiningup health and care information, for example, betterintegration of care, reduced risk of errors and betterplanning of services to ensure Londoners’ needs are met.Whilst the benefits of joining up information may beobvious to many, we cannot assume that the casehas been made more broadly across our population.It is therefore vital that we engage with Londoners tounderstand exactly what people’s expectations are;and to build trust, support and confidence amongst thepublic (and health and care professionals) about the useof health and care information for direct care delivery andfor a range of other uses.This independent research, authored by CurvedThinkingand developed in collaboration with Understanding PatientData, provides detailed insight into what is currently knownabout people’s expectations and attitudes to the use ofhealth and care data. In doing so, it also identifies the gapsin evidence and our understanding. The result is a uniquecontribution to a growing body of research which will notonly inform OneLondon’s wide-reaching engagementprocess, but can support the development of the LHCREprogramme nationally.The importance of building and maintaining publictrust and confidence with regards to data use shouldnot be underestimated. There are multiple factors thathave confused debate around information sharing inthe past. These range from genuine uncertainty fromdata controllers, e.g. GPs; to broader implicit publicassumption as to what is already happening. The scopefor misunderstanding and cynicism is high, and thereforethe need for clarity and transparency is crucial.If we are to deliver the benefits of data sharing forLondoners, we must address this risk by avoidingpast mistakes. We must not repeat the assumptionsthat bureaucratic conviction or political endorsementare alone sufficient. Both are necessary, but the mostimportant factor will be to engender much widerunderstanding, support and confidence amongst thepublic and health and care professionals. To createand sustain legitimacy and trustworthiness, we mustunderstand and respond to Londoners’ expectationsaround data sharing for multiple purposes, and ensurewe operate in line with these expectations.As an example, one of the most notable findings detailedin the report is the strong expectation of Londoners thattheir information should be available to clinicians at thepoint of care to support their individual care. OneLondonis therefore expediating this work, with implementationover the course of 2019/20. This is great news for bothcitizens and health and care professionals, and will bringsignificant benefits.For example, an elderly woman living in south Londonwho presents at a north London A&E can be treatedsafely and efficiently after access to her patient recordidentifies her current medication and multiple long-termconditions. A GP treating a young teenager who hasrecently moved from Hammersmith to Hackney cansee that he’s previously been affected by mental healthchallenges, and can provide the best care without thepatient having to re-tell his story.Whilst Londoners’ expectations around using datato support their individual care are clear, what’sless understood - as evidenced in the report - istheir expectations in relation to other uses of healthinformation; for example, service planning or proactivecare. OneLondon has an opportunity as part of its remit,to help develop the technical infrastructure required tosupport these secondary uses. However, we must fulfilthis remit in line with Londoners’ expectations. As such,we need to find out more.4
Understanding public expectations of the use of health and care dataOneLondon responsePrevious public engagement has tended to focuson surfacing concerns or perceived benefits aroundinformation and data sharing. It hasn’t focussed on whatLondoners really expect of their health and care system,and what trade-offs people find agreeable in practicebetween benefits and concerns. To build trust and gain aclearer understanding, we need to engage Londoners ina meaningful conversation to surface these expectationsand explore trade-offs.This autumn, OneLondon’s engagement programme willmobilise a different type of conversation with citizens andprofessionals: one that is open, honest and frank, onethat doesn’t shy away from the issues and complexities,but which embraces and respects them.As recommended by this report, we will have a focuson engaging with seldom-heard as well as vulnerablegroups: these are the people who arguably have the mostto gain from the OneLondon initiative, but whose voiceshistorically have been too rarely heard.With visible leadership from clinicians, regional NHSexecutives and the GLA, we will - for the first time establish empirical evidence of the expectations ofLondoners in this space, working with Londoners toshape ‘the rules of the game’ and to ensure that weproceed in a way which builds trustworthiness andconfidence.Working with the NHS and local government acrossLondon as well as the Greater London Authority (GLA),and the three Academic Health Science Networks, thisprogramme will have significant reach across London.Luke Readman,Director of Digital Transformation for London,Chief Officer for OneLondonDr Vin Diwakar,Chief Clinical Information Officer and Regional Medical Director forNHS England (London), Senior Responsible Officer for OneLondon5
Understanding public expectations of the use of health and care dataContentsForeword2OneLondon response4Contents6Introduction7Summary81Setting the scene152Care of the individual19Direct individual care19Concerns and expectations23Proactive care28Beyond direct care: improving health, care and services30Secondary uses overall30Systems planning33Research36Is London different?4234References466
Understanding public expectations of the use of health and care dataIntroductionThis work was commissioned to inform the developmentof the OneLondon Local Health and Care RecordExemplar. A central commitment is to involve Londonersin an authentic and purposeful process of engagementand deliberation to help design and develop an approachto the sharing of patient health and care information. Theobjective of OneLondon’s engagement is to ensure thatthe Local Health and Care Record Exemplar operates ina way that is in line with the public’s expectations of theappropriate functions of a health and care system.To that end, this report collates and synthesises existingknowledge about public expectations and attitudestowards the sharing of patient health information. Ouraim is to clarify: those things that can be said with some confidenceabout the public’s expectations and attitudes towardsthe sharing of patient health information; and those areas where conclusions are much less certainin regard to the public’s expectations and attitudes,and which should be a focus for OneLondon’s nextphases of public engagement and deliberation.Our review highlights areas of significant consistencyemerging from our review and stakeholder interviews inrelation to public expectations and attitudes: The public has an expectation that patient healthinformation will be shared for the purposes ofindividual direct care, with that information availableto the full range of NHS clinicians; and researchto date shows a degree of surprise amongst thepublic that this expectation is not routinely met. Theliterature consistently indicates that the public has anexpectation that this will be executed in a way which issecure and proportionate. The evidence is consistently underdeveloped orequivocal in several other areas, and more specificwork needs to be undertaken to explore the public’sexpectations about the use of patient healthinformation by the NHS for the purposes of systemplanning and research. Deliberative exercises haveshown that the public is more comfortable withsecondary data sharing for research where it resultsin clear public benefit, but the eviden
of health and care information for direct care delivery and for a range of other uses. This independent research, authored by CurvedThinking and developed in collaboration with Understanding Patient Data, provides detailed insight into what is currently known about people’s expectations and attitudes to the use of health and care data. In doing so, it also identifies the gaps in evidence and .
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