Social care informatics as an essential part of holistic health care: A call for action

Journal Identification = IJB Article Identification = 2759 Date: July 2, 2011 Time: 3:9 am

i n t e r n a t i o n a l j o u r n a l o f m e d i c a l i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554

j ourna l ho mepage: www.i jmi journa l .com

Social care informatics as an essential part of holistic healthcare: A call for action

Michael Rigbya,∗, Penny Hill b, Sabine Kochc, Debbie Keelingd

a School of Public Policy and Professional Practice, Keele University, Keele, UKb NHS Information Centre for Health and Social Care, Leeds, UKc Health Informatics Centre, LIME, Karolinska Institutet, Stockholm, Swedend Manchester Business School, The University of Manchester, Manchester, UK

a r t i c l e i n f o

Article history:

Received 13 January 2011

Received in revised form 2 June 2011

Accepted 7 June 2011

Keywords:

Health

Informatics

Social care

Integrated care

Holism

Patient-centric

Carers

a b s t r a c t

Purpose: The authors identified the need for a cross-disciplinary research view of issues to

ensure an integrated citizen-centric support to achieve optimal health of individual citi-

zens and, in particular, the role of informatics to inform and coordinate support towards

integrated and holistic care.

Method: An Exploratory Workshop was approved and sponsored by the European Science

Foundation. Twenty-three participants from 15 countries attended, covering a full range of

health, social care and informatics professions and disciplines.

Results: The participants found strong common ground in identifying key issues to be

addressed if citizens with compromised health are to receive integrated and coordinated

support to a common set of objectives, while also ensuring appropriate choice and support

for citizen, family and other informal carers. At the same time, optimal health was identified

as a fundamental human right, and that achieving this is a necessary priority of a caring

society. Moreover, Europe has a commitment to researching and developing health infor-

matics (e-health), though not yet giving a priority to this integration of health and social

care. Specifically the following main informatics challenges to be addressed were identified:

(1) to identify available information and communication needs related to different scenar-

ios of use in the intersection between health and social care, (2) to develop and map shared

ontologies, and standards for integration and/or brokerage, (3) to enable planned informa-

tion access and sharing, shaping a system of trust where the patient is an active partner

and policies are established considering all partners/interests, (4) to investigate the use of

automatic/intelligent knowledge based and context-relevant services, and (5) empowering

the citizen (or their selected agent) as co-producer through modern informatics tools, while

carefully avoiding selective disempowerment of the most vulnerable.

Conclusion: The Exploratory Workshop resulted in a unanimous Declaration for action, which

is presented appended to this paper.

© 2011 Published by Elsevier Ireland Ltd.

∗ Corresponding author at: Lavender Hill, 6 Carrighill Lower, CalverstowE-mail address: [email protected] (M. Rigby).

1386-5056/$ – see front matter © 2011 Published by Elsevier Ireland Ltddoi:10.1016/j.ijmedinf.2011.06.001

n, Kilcullen, Co. Kildare, Ireland. Tel.: +353 45 485858.

.

dx.doi.org/10.1016/j.ijmedinf.2011.06.001

mailto:[email protected]



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. Introduction

n a health care domain where health is frequently assumedo be represented by a set of reference-matching digitallyecorded biophysical data, it is essential to go back to core val-es and remember that health is in fact an optimum level ofersonal functioning, both physical and perceived, defined inhe World Health Organization constitution as “a state of phys-cal, mental, and social well-being and not merely the absencef disease or infirmity” [1]. Commensurately, its achievementnd maintenance require much more than formal health carewhich in fact consists largely of services for illnesses). This,herefore, includes being able to achieve normal living, thoughhis may be facilitated by family, friends, or formal services.ndependent healthy living can (and should) be achieved indult life, but in the early stages of life, and often in theery later years, persons need assistance in order to achieveell-being and health; this is also the case for anyone of any

ge with an illness or disability that compromises their self-aintenance ability.Social care is needed as a key support to the health of

any individuals, to ensure a range of essential facilita-ion including nutrition, hygiene, and safe living as well asocial well-being. These services to maintain health maynclude provision of meals, personal hygiene support, mobil-ty, and enabling activities such as shopping for food and otherssentials, which are not traditional health services, but aressential to health, as without them the health of the individ-al with particular needs would be compromised and then fail

2,3]. But given the balance of needs and complexities of theife of a person with illness- or impairment-based needs, theervices providing social care support must work in harmonyith those providing health care. Provision must also com-rise a balance between formal services, family, and the localommunity or society, matching the needs and circumstancesf each individual.

Across Europe the demographic pressures of increasedongevity, coupled with more people surviving serious illnessut often with increased dependency, are increasing demandor such services. This is compounded by increased consumerxpectations of service responsiveness and quality based onore widespread consumer-orientated attitudes of commerce

nd society, coupled with societal pressures for more andetter services for needy members of society. However, act-

ng counter to these expectations is increasing specialismithin health services and social care services, creating a

endency towards fragmentation of provision, and silos of spe-ialist knowledge and detailed records. This specialism mayave technical justification, but acts counter to the aims ofitizen-based holism and of service coordination and inte-ration. Above all, health and social care support should bearmonised and coordinated since they are about the healthf the needy individual, rather than being fractured and poten-ially clashing.

As with most modern services, not just health care, infor-
ation technology has a vital role to play in ensuring quality,
fficiency and effectiveness of social care services – paperecords and telephone calls alone are not the best way tonsure responsive services and interlinked personal support.

f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554 545

However, social care informatics has not only received far lessattention and investment than health care informatics [4], butalso has hitherto been outside the health informatics familyeven though the role of social care is to maintain the client’shealth, often in partnership with health care [5].

1.1. The need for action

Increasingly the need for some coordination between therecording and informatics systems of health and social careservices is being acknowledged, but at a simplistic level. Gov-ernments and others now frequently talk of a composite‘health and social care’, without realizing the work neededto link two very differently organised domains, with differentmethods of working, types of professionalism, or partnershipwith clients and their informal carers. Indeed, merely chang-ing labels will lead to a false sense of progress, and fail toaddress the coming together needed [5].

A further challenge is that in most countries the manage-ment, legislation and funding of health care are quite distinctfrom the management, legislation and funding of social care,with the former usually being a distinct national sector whilesocial care is frequently a local government responsibility. Theresult of this split of systems is the lack of a level of coordi-nation and ownership between health and social care, thoughthey serve the same citizens.

To start to address this concern the authors of this papersuccessfully obtained funding from the European ScienceFoundation (ESF) – the umbrella body of the national researchcouncils in Europe – to run an invitational Exploratory Work-shop on The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care, in order to exam-ine the issues and suggest priorities for action. The report isnow published on the ESF web site [6].

2. Method

Each year the ESF invites proposals for Exploratory Work-shops “aimed at opening up new directions in research toexplore new fields with a potential impact on developmentsin science” [7]. A proposal by the authors for a workshop onthe issues of integrating social care informatics with healthcare informatics to support integrated care for the citizen wasaccepted by the ESF for its 2010 programme.

2.1. ESF Exploratory Workshop – structure

The event was held at Keele University, UK, in July 2010.A total of 23 participants based in 15 European countriesaccepted the ESF’s invitation to attend, and they includeda wide range of disciplines including social work, medicine,nursing, law, ethics, informatics, consumer psychology, organ-isational and systems studies, health management and healthpolicy among others. Many of these participants were alsooffice holders or members of a number of European groups,
including the European Federation for Medical Informatics(EFMI) and the European Patients Forum (EPF). The full del-egate list appears at the end of the Declaration presented inAppendix A.


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The workshop was held under Chatham House rules,whereby prepared presentations to initiate discussionwere presented by the authors, while the discussion wasunattributable to permit free discussion. Through thismethod open discussion consensus was maintained, andthe participants reached unanimous positions on the issuesraised and on the priorities for action. The final ScientificReport was accepted by the ESF after due review, and wasposted on their web site in December 2010 [6].

2.2. ESF Exploratory Workshop – content

The workshop discussion comprised two key elements –identification of the key issues, then consideration of theaction necessary to progress citizen-based health support,by following a number of themes. These themes comprised:the essentials of social care service delivery and of collab-oration with health care delivery; the current situation ineach of a structured sample of six varied European coun-tries; information issues to be addressed; and the potentialrole and challenges of electronic shared care records. Groupdiscussions covered supporting the citizen and their carers;understanding terminology and meaning; who should seeand share records; electronic record provision and custodian-ship; electronic record content and constraints; and electronicrecord linkages and exchanges. In raising the issues, analysingthe particular needs with regard to social care informaticsand ensuring integrated citizen-centric support to health, andidentifying the research questions needing to be addressed,participants called on personal expertise, research and policystudies, and fundamental guiding principles.

3. Results

A comprehensive discussion of all issues raised during theworkshop, including an underpinning bibliography, is pre-sented more fully in the final scientific report [6]. The keyissues and proposals are presented here. Above all the work-shop participants, through their analysis, became stronglyaware of the need for coordinated action at a high level inEurope (and indeed wider), and formulated a unanimous Dec-laration: Social Care Informatics meets Health Care Informatics – aHolistic Citizen-Centric Vision for Information and CommunicationTechnologies to Support Personal Health, which is presented inAppendix A.

3.1. Identifying the key issues

The following sections highlight the key issues raised withregard to coordinated care delivery and informatics needs, andthe rationale underpinning the concluding Declaration.

3.1.1. The nature of social care provisionSocial care has broadly two elements, each of which is impor-tant in its own right, but that importance is part of ensuring
the overall health and well-being of the citizen. One element isthe professional services provided by a range of social care pro-fessions; the other element is arranging the provision (directlyor through approved providers) of a range of essential sup-
i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554

port services. However, within individual countries there arevariations in the locus of responsibility, and in the bound-ary between services provided by health agencies and thoseprovided by social care agencies.

The main professional social care services comprise:assessment of need and risk; supported planning andreview; care coordination and commissioning; reablement;counselling; safeguarding; family support and interventions;fostering and adoption; and advice, guidance and service bro-kerage. In general, they are provided directly by professionalstaff of the social care system.

The daily living support provided or approved and coor-dinated by social care agencies can comprise a wide rangeof services. The core ones are aids to daily living; mobilityassistance; assistive technologies; meals; social activities; sup-ported learning and employment; home help for domestictasks including cleaning; personal care and personal assis-tants; night sitting and personal care; respite care (includingrelief carers); and residential care homes. Frequently theseare provided by specialist service suppliers, which may benon-governmental organisations, or private companies (forprofit or not for profit), and an internal market may apply [8].Where support is supplied informally by family and friends,increasingly it is felt important to identify and incorporatethese informal carers into the overall understanding of careprovision partnership. It is also increasingly being seen asappropriate to give supported citizens choice in the form offormal support provided within a defined resource envelope– for instance, between meals being provided by home deliv-ery, by assistance with transport to a luncheon centre, or byassistance to visit a local restaurant. In many cases the clientmay make a co-payment, so accounting issues arise as well asconfirmation of service delivery and uptake.

Both these types of support may be provided singly or, moreusually, as part of a package of care. Each may be provided bya different provider, or organisations may supply a numberof the services. They can have both short-term (often crisis)aspects, and long-term planned ones, according to individ-ual needs. The ideal outcome is individual independence andwell-being.

3.1.2. Types of client and types of needSocial services clients can include anyone needing supportwith daily life, due to illness, impairment (mental or physical),frailty, or adverse social or financial circumstances. They maybe children and adults, and increasingly the frail elderly. Careservices may be needed at different times of life and in differ-ent types of need or crisis: supporting disability in changingways throughout life, following an accident or sudden acuteillness, to mitigate long-term health conditions particularlychronic disease and survival of acute health care, safeguardingthe vulnerable, and in end of life care.

3.1.3. Types of social care providerThe pattern of provision is a mixed economy in the fullestsense of the term. Many agencies contribute, including the
family to the greatest degree possible (the person themselves,the domestic family, and other relatives), the community(neighbours, friends, faith groups and other regular contacts),the state (public sector agencies, state funded services), the


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oluntary sector (charities and other NGOs based on condi-ions such as diabetes or mental health or on services suchs housing or meals delivery, self help groups), and privateroviders (private practitioners, paid carers, care homes, careervices).

.1.4. The potential role of informatics in social caren most settings, informatics is only slowly being brought ino help address the challenges of managing and deliveringptimal social care, let alone harmonisation with health care.ssues around identification, service delivery and monitoringhat informatics can help to address in social care case man-gement and service delivery include:

Better informing the public on what is available, what iseffective, and how to identify what they need.Safeguarding the vulnerable, but without unnecessary orintrusive intervention.Delivering quality services, working in partnership withindividuals to enable them to achieve personal outcomes.

Supporting and demonstrating the quality and effective-ness of services (service audit, research, prevention).

Identifying service pressures and managing service deliverywithin available resources.

Supporting the workforce in developing appropriate skillsfor delivering the services required.

Managing markets and ensuring that relevant services areavailable to respond to both community and individualneed.

Interfacing more closely health and care data to supportseamless services.Planning for future services linked to the needs of local com-munities.

Monitoring public (and informing personal) spending, anddemonstrating value for money, efficiency and effective-ness.

Monitoring the implementation and appropriation of policy,with associated common indicators.

Ensuring compliance with standards, regulation and legis-lation.

Social care informatics systems need developing to meethese needs. Integral to that process will be the developmentf principles, and identification and training of a social care

nformatics workforce, and the overall creation of a profes-ional ethos. This needs intrinsic understanding of social care,ut close harmonisation with health care informatics [5].

.1.5. The importance of holistic integrationy definition, ensuring delivery of social care and personal liv-

ng support needs is important to avoid compromising health,ut in a high proportion of cases the citizen will also be receiv-

ng conventional medical services for their condition. Thusoordination of purpose and harmonisation of delivery will beery important for the citizen, but currently are seldom sys-ematically arranged. Health services are already advanced
sers of informatics, though less so in domiciliary serviceelivery; social care systems so far have much lower infor-atics usage, and there is little harmonisation between the
wo – starting with different client identifiers.

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Thus this is a key opportunity to build coordination intosystem design. Given the different types of service, and relatedto that the different nature of records, full integration is not afeasible immediate target, and indeed may not be an appro-priate long-term target. What is vitally important as a wayforward is to identify and share the intersection points. Asalready generally identified in ref. [9], these include:

• Initiation of patient/citizen-specific changes in care provi-sion.

• Important patient-specific health events.• Coordination of planned activities.• Referrals.• Delegations.• Consultations.• Goals and targets, especially in lifestyle and daily living.• Key pressure points, challenges, and threats to well-being.• Identification triggers, and contact points, in the event of

change in health or ability.

The potential of informatics systems to facilitate this hasalready been reported [9–13].

3.1.6. The challenge of the absence of providercoordinationThe fundamental problem to development of an integratedapproach is that though politicians, provider organisationsand professionals recognise the importance of both social andhealth care as necessary supports to maintain and improvethe health of citizens, usually there is no common organisa-tional leadership or ownership, and in only a few countriesis there any effective mechanism for this. In most countriessocial care and health are funded, regulated and managedby totally different mechanisms, and their informatics policesand systems similarly are separately funded and indeed con-structed. Even in the small number of countries where thereis a common health and social care delivery structure, suchas Denmark and Ireland, the informatics focus is on tradi-tional e-health. The main exception is Finland, with an activenational planned e-health and e-welfare programme to pro-vide e-services to citizens, with service delivery for both healthand welfare being a municipality responsibility.

Without such core coordination of health and social care,and its informatics support, the integration of services to thecitizen is problematic. Challenges include:

• Who coordinates care objectives for the individual citizen?• Who coordinates the related records?• Who coordinates Informatics policies and systems?• Who provides coordination at EU Research and Policy levels?

In the absence of integrated or coordinated service provi-sion, ensuring harmonisation at the level of the individual isby default usually left to the individual citizen or their carer;though by definition the citizen is not in good health and islikely to be vulnerable and least empowered, while the carer
may not be fully informed nor authorised by the client, andmay have a vested interest in certain types of service provi-sion to relieve their own situation. This is not the appropriateapproach for a caring society. It is clear that much needs to


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be done to support effectively citizens’ health through mod-ernisation of social care delivery, and coordination with thehealth sector to form an integrated holistic web of support,and informatics can be a catalyst and enabler.

3.1.7. Developing integrated informatics: issues andopportunities to be facedOverall, the findings of the workshop were that it was essen-tial in consideration of both human rights and core healthvalues, and also in terms of efficiency and effectiveness, forhealth and social care delivery to be considered and effectedholistically from the citizen’s perspective – while still main-taining optimum professional input. Family, community, andother agencies should be seen as partners, yet with aware-ness of occasionally perverse motivation or limited skills. Theapplication of informatics in both settings gives new oppor-tunities, both within the sectors but also with integrationalopportunities. New interface technologies could be more user-friendly and could enable personalisation of services, whiletechnologies such as brokers mean that full record integrationis not necessary, while signals analysis and decision supportcould make much better use of automated monitoring sig-nals [14–17]. The technologies exist – it is the exploitationand application in a low-profit field that needs positive andcoordinated action.

Yet at the same time, major challenges have to beaddressed when coordinating two fields differing intrinsicallyin professional culture and work processes. Social care recordsare very different from health records in content and in theapproach to recording third parties; health records being nar-row but deep while social care records are shallower butcontextually much wider [8,18]. Workshop members identifiedthat additional issues to be faced include:

• Agreeing common citizen identifiers within country, and forcitizens who move across borders.

• Identifying professions and professionals.• Sharing and mutually understanding topical vocabularies

and taxonomies.• Models of citizen-determined access to record elements.• Patient diaries, cross-agency scheduling of activities, and

time resource management.• Defining cross-agency packages of care, and recognising

mutual inter-dependence.• Automating delivery monitoring and quality assurance.• Recognising that personal records are no longer a repository

of historic data, but include a set of nodes linking to dynamicprocesses and representation of changing needs.

• Third party advocacy for citizens not able to manage theiraffairs, or electronic systems.

• Support to ensure those not digitally enabled or empoweredare not disadvantaged.

• Governance models and rules.• Education, awareness, and training programmes.

Finding solutions to these should not be impossible in a
societal context which the European Commission has des-ignated the Information Society, and in which not onlycommerce and personal services are largely digitally based,but also in which technologies such as broadband and applica-
i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554

tions such as social networking, Internet shopping and on-linegaming are becoming commonplace.

In a modern caring society, and one that also faces anincrease in the numbers of partially or wholly dependent per-sons, yet is also a society that has high consumer expectationsof services, moving from silo-based specialist services with thecitizen as travelling broker like a shopper traversing marketstalls in a cobbled square in bad weather, to one in which thepattern of care can be viewed by all contributors virtually inreal time, where the citizen has an input of choices and prefer-ences, and where delivery can be coordinated and monitored,with changes in need fed back to the virtual team quickly, isan achievable vision. It is the means of coordination and thewill to invest that are missing. The workshop identified thisas an action that was urgently needed, but which could beaccomplished with the right commitment.

3.2. The identified necessary action

As enshrined in Article 25 of the United Nations UniversalDeclaration of Human Rights, health and well-being is a fun-damental human right, including “medical care and necessarysocial services” [19]. Thus it is necessary, in order that eachEuropean citizen can enjoy such rights, that means are foundof identifying and supplying services appropriate to individ-ual needs in order to fulfil this right. In the context of theEuropean level of development, and the development of theInformation Society, it is necessary to ensure that informaticsservices develop to assist in the fulfilment of this right.

Given the current situation, it is clear that a concertedprogramme of action is necessary if citizens of European coun-tries are to receive modern services matched to personal needcommensurate with the Information Society, in fulfilment ofthis right. In particular, the workshop participants identifiedthat the following issues need to be addressed, and includedthese as central to their Declaration of a vision and the relatedneed for action.

3.2.1. Codification of subject rights for electronic recordand care delivery systems containing social care dataGiven not just the sensitive nature of personal social care dataas well as health care data, but equally importantly the right ofthe individual to know about their health and their perceivedneeds, it is important to enshrine the rights of the individualin a code. Europe has been a pioneer in systematising the pro-tection of personal data matched by protection of the rightsof the subject. However, given the inter-personal issues, theneed to balance the client–provider relationship and the needto appoint proxies and agents at time of illness and adversity,yet to protect against ill-motivated individuals, a more specificcharter is needed regarding data subjects’ rights on electroni-cally held health and social care data potentially available (forgood reason) for sharing with the formal and informal careteams. This should also include rights to express and recordtheir own views and preferences; to record observations ontheir own health, functioning and needs; to set individualised
rules for information sharing to formal and informal third par-ties involved in care or family support; and the right to accessnot only historic data but also dynamic process data such asplanned forward care delivery schedules. The charter should


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rovide explicit rights to appoint specified representatives andgents, and to qualify or limit their authority.

.2.2. Eliciting the range of user needst this crucial formative stage of social care and integratedare informatics, it would be highly beneficial to determinend define the range of user needs for an ICT-enabled sup-orting framework designed to provide different users andtakeholders with context-relevant knowledge. This wouldnclude information to citizens and their agents on availabilityf citizen-centred health and social care services; informationo citizens and their agents on their assessed personal needsnd their resourced entitlements and opportunities; as well asoordination and communication information regarding carelans and delivery. As with the care to be delivered, supporting

nformation systems should be developed based on scien-ific analysis of priorities, preferences, choices and desiredestrictions, and not on assumptions or small scale local stud-es. Such analysis and requirement specification should alsoscertain client and citizen attitudes to the degree and naturef sharing between health and care domains, as well as withinhem, in the interests of balancing integrated care with privacynd autonomy.

.2.3. Community of practiceith the desirability of focussing increasingly on citizen-

riented holistic care, linking domains as appropriate, it ismportant to develop an identifiable community of practicehat shares knowledge, innovation and good practice. Thishould also enable future learning and further developmentf terms and meaning, including definitions of membershipnd professionalism. It should accommodate the differentpproaches of the health and the social care domains, thereas of overlap between aspects of community nursing andspects of social care, and the wider development of mutualnderstanding and respect for informatics practice betweenractice areas and care delivery modalities [4,5]. It shouldlso foster the development of an evidence base built uponcientific evaluation [20], and the identification and futurevoidance of approaches with adverse outcomes, as haslready been triggered in the health domain [21].

.2.4. An ontology and meta-taxonomies for social careinked also to health caref services enabled by informatics are to deliver integratednd coordinated care with a common purpose, which is surelyhat the citizen requires and expects, then it is necessary toave a common language and terminology shared betweenhe health and social care domains. This is needed to sup-ort a range of core standards and terminologies to underpineed assessment, service planning (both for short-term needs,nd to meet lifelong conditions), service provision, and theonitoring of outcomes. This in turn should enable safe and

onsistent information sharing across social care, health and
ther sectors around the citizen. These ontologies and meta-axonomies should relate to existing health care ontologies.hey should meet local and national needs, but should be ade-uately harmonised across Europe (and beyond) to support the
f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554 549

situation when the citizen moves – including those who movefrom colder to warmer parts of Europe for the winter season.

3.2.5. Information system custodianshipDiscussions of who ‘owns’ social care data, and health data,can be fraught, but ultimately are a digression. The citizen, andtheir health and social care providers (individual and organisa-tional), all have direct interests in the recorded facts (includingnecessarily recorded opinions). The citizen as data subject hasfeelings and rights of confidentiality, of privacy as to theirhealth status and social and family context, and to their vieprivée, but a care provider may feel that the same data may betaken to reflect on their professional practice so they too have avital interest. These problems can be resolved if the record sys-tems are seen as trusted but impartial custodians of the data,with duties as to standards of protection, and with the issuesof access being separate mandated requirements. To achievethis, suitable robust models of ICT systems storage, processingand access for social care data and its integration with healthcare, including audit, accountability and monitoring criteria,need to be developed and endorsed.

3.2.6. Models of rights to data accessThis need follows on from the preceding point, but needs torecognise that legislation differs across Europe, and withinmost countries between the regulations for health and forsocial care data. Further, it needs to be acknowledged thatthere are clear but distinct interests of the citizen as datasubject; professionals involved in assessment and care deliv-ery; third parties named within social care and health records;organisations discharging health and social care delivery func-tions; funding and monitoring organisations; and others to bedefined such as research bodies, and that the respective rightsof access need to be defined and codified. It is a societal inter-est that clear models should be in place to frame and underpinoperational data services, but it is also in the interests of thecitizen that these should be effective – including the neces-sary background activities such as quality assurance and stafftraining on which they depend indirectly.

3.2.7. Redefining ‘records’ and ‘data’Another dimension also needing further open and informeddebate is that traditional concepts of ‘data’ and ‘records’ arenow historic and restrictive. In a modern interactive set-ting, informatics systems will now included person-specificdata embedded into processes such as waiting lists forappointments, and work scheduling including care pathwayoptimisation. ‘Records’ will include both historic data andprospective intentions to take an action; what have hithertobeen seen solely as static recorded ‘data’ will now include interalia contacts, activities, encounters, assessments, requests,goals and targets, mandates, and inter-agency liaison, whichwill be in the form of active processes. Understanding ofconcepts of electronically held records, and aspects such assubject access to ‘data’, will need to be updated and expandedto support interactive processes and targeted services.

3.2.8. Rules for urgent sharing of informationIn any health-related setting, providing adequate immediateresponse to emergencies, or to sudden changes of health sta-



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tus, is vital. With the integration of social and health caresupport, it may well be a member of the social care teamwho first identifies an urgent issue, but conversely it may bea member of the health team who identifies the need for animmediate change to social care support, or the foundation onwhich it is delivered (such as hospitalisation of a key informalcarer). There may also be legitimate enquiries from police orsimilar non-health agencies, not least in cases of unusual orextreme behaviour. Such urgent sharing or seeking of infor-mation is in the patient’s best interest and, therefore, shouldnot be impeded by data access controls which are in place forotherwise good reason. Yet casual or reckless breaching of con-fidentiality agreements is not tenable either. Clear rules needto be developed to support, yet strictly monitor, urgent sharingneeds, which in an integrated setting will need to encompassnot only traditional life-threatening situations such as suddencoma, but others including care staff needing to report to therelevant health professional a new situation such as suddenbizarre behaviour, and also situations such as if the provider ofessential support – for example, meals for a bed-bound person– becomes suddenly incapacitated.

3.2.9. Needs for access to informationMost requirements to access health or care data are not in anemergency situation, and access regarding persons with com-pound needs or comorbidity is frequent and complex. Theserequirements need codifying to provide transparent rules forall to follow, and be seen to follow. Planned assessment andresultant direct delivery of care are the core purpose of healthand care record access and entries, and thus are the mostobvious and common. They will normally be with the client’sconsent, but occasionally will not be so, or the client may notbe able to comprehend. Authorisation of access rules must beclear, as must the arrangements for providing proxy consentor for enabling access without consent when an appropriateperson can identify and record sufficient justification to doso. However, there are other reasons when access to data isimportant for the longer term good of the individual and ofsociety; such reasons may include managerial verification ofservice delivery, quality and outcome monitoring, staff train-ing and development, complaint investigation, financial audit,and supervised student placement. Identifying and codify-ing types of justifiable access, with related authorisation andmonitoring mechanisms, are important.

3.2.10. Research and development of leading edge ICTinnovation and appropriate applicationFortunately, in Europe, research into e-health is flourishing,though often focussed on acute care, or technical applicationssuch as telemedicine or remote monitoring. Important thoughthese are, far more emphasis needs to be placed on researchinto effective applications that are acceptable and accessibleto the total eligible population, and which support actual caredelivery services. The need for integrated care delivery is far
more common, and likely to have much more impact on qual-ity of life, than cross-border inter-operability on which Europecurrently puts so much emphasis [22,23]. Devising the ICTapplication or the data acquisition is only a preliminary step –
i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554

contextual application research is needed to understand andbetter develop many areas, including:

• Controlled forms of information brokerage, cross-viewing,or record sharing between agencies and providers, as wellas by citizens and their supporters.

• The ethical, cultural, professional, legal and practical issuesrelated to the joint management of health and socialinformation and communication, and in particular to thegeneration and maintenance of a holistic synthesis of thehealth and social conditions of the subject of care.

• Technology assisted scheduling, resource management,request handling, and negotiation.

• Near real time delivery monitoring.• Integration of user messaging into scheduling systems.• Planning tools to enable citizens as well as formal carers to

build packages of care within personal need, resource andpolicy constraints.

• Assessment and decision support tools that assist both cit-izens and professionals when profiling needs or identifyingrisks.

• Trusted data stores with representation of service type,providers, and availability in social and related care.

• New concepts of user-friendly intuitive devices utilisingtechnologies such as touch screen and drag-and-drop.

• Knowledge management services to help inform citizens’and carers’ choices.

Such research and development needs to generate evi-dence that is accessible and credible to the public, topoliticians and corporate bodies which decide investmentstrategies, and to citizens and professionals who will use theresultant applications. In this context, proof-of-concept stud-ies have only a limited initial value – it is roll-out studies tonon-research sites, and subsequent impartial monitoring andevaluation, which are the means of generating credible evi-dence.

3.2.11. Education programmes for citizens, clients, carers,and professionalsThe use of ICTs in the very personal and sensitive domain ofsocial care and integrated health and social care support tohealth seems anomalous to many citizens, and indeed pro-fessionals. Many of the beneficiaries of such services are olderthan the IT literate generations, and a not insignificant pro-portion will not have previous access to such technologies.ICTs can have significant benefits, but should not be imposedon a sceptical or untrained clientele. The development of atti-tudinal and educational programmes will be vitally importantfor success. Thus awareness and benefits material needs to beoffered to the public, and customised education and trainingneed to be prepared for clients, carers, and professionals.

4. Discussion

Recognition by a leading research sponsor, namely the ESF, is amajor indicator of the importance of identifying and address-ing the many issues needed to apply modern technologies tothe management and delivery of social care, and of linking



a l i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554 551

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Summary pointsWhat was already known on the topic

• Health care informatics is a well-established tool tosupport health care delivery

• Health of individuals requires much more than healthcare, but also essential daily living functions

• Social care services provide and coordinate supportservices, but social care informatics support is not yetwell developed.

• With an increasing proportion of the population hav-ing need for both health and social care servicesdue in particular to the results of age or chronic ill-ness, yet with an increasingly consumer-orientatedand information based society, there is an ethical anddemand-led need to ensure holistic and integratedsupport to citizens, not least through harmonisationof the information and scheduling potential of healthand social care informatics.

What this study added to our knowledge

• A cross-disciplinary and international group of Euro-pean experts could find and agree a common vision,and produce a unanimous joint Declaration on SocialCare Informatics meets Health Care Informatics – a HolisticCitizen-Centric Vision for Information and CommunicationTechnologies to Support Personal Health.

• Much work needs to be done to achieve this vision ofimproved personal support to health, both in estab-lishing rights and principles and their codification,and in exploiting informatics systems to support inte-grated health and social care in an enabling andcitizen-empowering manner.

• Much of this work could effectively be carried out atEuropean (or wider international) level, and shouldbe seen as both a social and an Information Societyimperative.


hat closely with health care in support of citizens’ health.he topics covered by the workshop showed that this is a keyocietal issue, and one which crosses many traditional pol-cy and research boundaries, and has no clear formal ‘owner’,ut is core to society as it represents the true health interestsnd support of individual citizens, who have one life and doot want a series of autonomous interfaces to disconnectedervices.

One short workshop alone will not solve the challenges, butt is significant that a cross-disciplinary international group ofuropean experts, many of whose members had not previ-usly met, could find a high degree of common ground, andfter mutual learning and open discussion could reach suchtrong accord. From arriving with the intention of an informediscussion, the participants moved within 24 hours to una-imity in deciding on, drafting, and agreeing a progressiveeclaration. This is presented in Appendix A, including a listf the signatories.

This indicates that there is a challenging range of issues toe addressed if integrated support to citizens’ health is to be

reality in European countries. Experience shows that opera-ional systems can seldom be transferred from one countryo another, due not just to language and record variations,ut to deeper structural aspects such as citizen identifica-ion, funding and organisational variation, and powers andesponsibilities of contributing professions. However, isolatedction by individual countries is not appropriate either, beingasteful and slow. Many issues, particularly the defining ofrinciples and assessment of technologies, can be achievedt European level to aid all countries. Secondly, there arepportunities to learn about successful practices and imple-entation approaches from among similar states, leading to

ffective learning and replication. Thirdly, unique approachesrom different cultures can lead to informed debate and learn-ng – such as the French concept of ‘usager’ as a wider conceptf a person who benefits from use compared with the moreands-on and artisan term ‘user’, or the role and functionf ‘notaire’ as an impartial official with legal standing butoming short of adversarial legal involvement. The test forociety, and particularly for the European and national careelivery and informatics bodies, is how they respond to this

dentification of key issues facing society if citizens in mosteed are to benefit from the information age and Informationociety.

. Conclusion

uropean countries, like most others globally, face an increasen the number and proportion of their citizens who haveither the frailty of age, or the functional impairments createdr exacerbated by chronic disease, often with comorbidity.upport and maintenance of their health, together with sup-orting effectively those recovering from acute illness orccident, and concomitantly the avoidance of blocking ofcute hospital or residential beds, needs more than health
are. Social care, and informal carers, are key parts of theicture, yet hitherto have been excluded from informationystems. The Declaration pronounced by the research-activerofessionally diverse participants in this ESF Exploratory
Workshop, and the rationale in this paper based on the fullreport, emphasise the importance of exploiting the means ofthe Information Society to support the most needy in Euro-pean society. The issues raised should start to open up thetechnical and societal debates, and to stimulate new lines ofresearch and development, and thereby to improve servicedevelopment and ultimately citizen health.

Authors’ contributions

MR initiated and convened the Exploratory Workshop whichunderpins this paper; PH, SK and DK facilitated and con-tributed the prepared presentations; MR edited the resultant
report. MR drafted this manuscript, PH, SK, and DK reviewedand all authors agreed it.


i c a l
Conflicts of interest

All four authors work academically (MR, SK, DK) and profes-sionally (PH) in the areas of informatics, social care and policy,but there are no direct conflicts of interest.

Acknowledgements

The underpinning Exploratory Workshop was funded bythe European Science Foundation by grant EW09-021. Therichness of results is due to the unrestricted informedcontributions of the 19 participants additional to theauthors.

Appendix A.

Declaration by members of the ESF Exploratory Workshop onsocial care informatics and holistic health care, Keele Univer-sity UK, July 2010

Social Care Informatics meets Health Care Informatics – aHolistic Citizen-Centric Vision for Information and Commu-nication Technologies to Support Personal Health.

The Members of this European Science FoundationExploratory Workshop, held at Keele University, Staffordshire,United Kingdom

Recognising

- that Health is internationally defined as a state of physical,mental and social well-being and not merely the absence ofdisease;

- the essential nature of the Fundamental Human Right ofevery citizen to the highest attainable level of personalhealth;

- that to reach this maximum achievable state of health manyEuropean citizens require individual support with essen-tial functions, which can include mobility, nutrition andfeeding, personal hygiene, social and mental support andassistance with tasks of daily living, together with appro-priate housing and financial stability;

- that whilst in an integrated society the prime sources ofthis support come naturally from family and communitysources, nevertheless (and increasingly) many individualsneed assistance from formal sources, predominantly socialcare services working in harmony with health services;

- that according to individual needs this support may beneeded either to cover a short-term problem or may beneeded sustainably in the longer term;

- that this health-enabling support should be provided with aphilosophy of meaningful empowerment of the citizen, allhaving equal rights and individual expectations, as well asthe right to respect for private life, with its implications forindividual self-determination and other aspects of privacy;

- and believing that current and emergent Information andCommunication Technologies can significantly facilitate theeffective and individualised delivery of such services spe-cific to personal needs and circumstances;

i n f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554

Declare the fundamental importance of

- providing harmonised health and social care services thatmeet the extended needs of the individual, taking intoaccount diversity in need, preferences, ability and support;and also recognising the concurrent resultant rights andneeds of informal carers as individual citizens;

- focussing these services on the individual citizen as thebeneficiary, including the pattern of delivery they find mosteffective;

- and to this end, utilising modern Information and Commu-nication Technologies as enabling services, as part of a widerhealth and social care toolkit;

- whilst recognising the importance of e-services being anappropriate enabling mechanism, and not an inappropriatereplacement for necessary inter-personal interaction;

- and also recognising that citizens may move between Euro-pean Union Member States (or indeed wider) during theperiod of need for support.

To this end, the members of this European Science Founda-tion Exploratory Workshop call on relevant authorities to initiateand facilitate a programme of Research and Development toinclude:

• Drafting a Charter of Subject Rights for Electronic Recordand Care Delivery Systems Containing Social Care Data,recognising the rights◦ of subject access not just to recorded historic data but

also including access to dynamic data such as forwardschedules;

◦ to express and record their own views and preferences;◦ to record observations on their own health, functioning,

and needs;◦ to decide personal directions on individualised rules for

information sharing to formal and informal third partiesinvolved in care or family support;

◦ and explicitly qualified rights of defined appointed repre-sentatives and agents.

• Eliciting and defining the Range of User Needs for an ICT-enabled supporting framework, to provide different usersand stakeholders with context-relevant knowledge basedon citizen-centred health and social care information aswell as coordination and communication.

• Defining a Community of Practice that shares knowledge,innovation and good practice, enabling future learning andfurther development of terms and meaning, including def-initions of membership and responsibilities. This shouldinclude consideration of the different approaches of thehealth and the social care domains, and the areas of over-lap between aspects of community nursing and aspects ofsocial care.

• Developing a shared Ontology and Meta-Taxonomies forSocial Care linked also to Health Care that supports a rangeof core standards and terminologies to underpin needassessment, service planning (both short-term, and to meet
lifelong needs), service provision, and the monitoring of out-comes, and that enables safe and consistent informationsharing across social care, health and other sectors aroundthe citizen. Ensuring that this ontology relates appropriately


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to health care ontology, meets local and national needs, andis adequately harmonised across Europe (and beyond) tosupport the situation when the citizen moves.

Developing suitable robust Models of Information SystemCustodianship, whereby ICT systems and the data they holdand process regarding social care and its integration withhealth care are provided by trusted parties accountable to,and monitored by, explicit and transparent standards.

Developing models of Rights to Data Access, recognisingand defining further the clear but distinct interests of thecitizen as data subject, professionals involved in assess-ment and care delivery, named third parties, funding andmonitoring organisations, and others to be defined; and alsothat ‘data’ will include inter alia contacts, activities, encoun-ters, assessments, requests, goals and targets, mandates,and inter-agency liaison

Developing clear and citizen-oriented Rules for UrgentSharing of Information, accommodating in emergenciessuch as a change of personal condition (health or function-ing), unexpected absence from home, and enquiries frompolice not least in cases of unusual or extreme behaviour.

Identifying and codifying justifiable Needs for Accessto Information other than immediate care delivery, withrelated authorisation and monitoring mechanisms–suchreasons may include service delivery, quality and outcomemonitoring, staff training and development, complaintinvestigation, and financial audit.Sponsoring Research and Development of Leading EdgeICT Innovation and Appropriate Application, including(but by no means restricted to)◦ controlled forms of information brokerage, cross-

viewing, or record sharing between agencies andproviders, as well as by citizens and their supporters;

◦ the ethical, cultural, professional, legal and practicalissues related to the joint management of health andsocial information and communication, and in particularto the generation and maintenance of a holistic synthesisof the health and social conditions of the subject of care;

◦ technology assisted scheduling, resource management,request handling, and negotiation;

◦ near real time delivery monitoring;◦ integration of user messaging into scheduling systems;◦ planning tools to enable citizens as well as formal carers

to build packages of care within personal need, resourceand policy constraints;

◦ assessment and decision support tools that assist bothcitizens and professionals when profiling needs or iden-tifying risks;

◦ trusted data stores with representation of service type,providers, and availability in social and related care;new concepts of user-friendly intuitive devices utilisingtechnologies such as touch screen and drag-and-drop;knowledge management services to help inform citizens’and carers’ choices.

Development of Education Programmes for citizens, carers,and professionals related to ICTs in Social Care and inte-
grated health and social care support to health;
and to achieve all these goals, to identify European Organ-sational Focal Points for coordination of research, policy

f o r m a t i c s 8 0 ( 2 0 1 1 ) 544–554 553

development, and practice support in Social Care Informat-ics and the integration of holistic care individualised to thecitizen.

Meanwhile we welcome, as an important initial move, theconcomitant proposal of participating officers of the EuropeanFederation for Medical Informatics to establish a Social CareInformatics and Individualised Health Working Group as onemeans of facilitating debate and development as a means toassisting progress.

On this 23rd. Day of July 2010

Professor Michael RigbyEmeritus Professor of Health Information Strategy, Keele

University, Keele, United Kingdom

Penny HillNHS Information Centre for Health and Social Care, Leeds,

United Kingdom

Dr Debbie KeelingLecturer, Manchester Business School, Manchester, United

Kingdom

Professor Sabine KochDirector, Health Informatics Centre, Karolinska Institute,

Stockholm, Sweden

Dr Albert AlonsoFundació Clínic per a la Recerca Biomèdica, Barcelona,

Spain

Professor Elske AmmenwerthUMIT – University for Health Sciences, Hall in Tyrol, Austria

Walter AtzoriAssistant Programme Officer, European Patients’ Forum,

Brussels

Professor Bernd BlobelHead, eHealth Competence Center, University of Regens-

burg Medical Center, Regensburg, Germany

Professor Luca BuccolieroDepartment of Marketing – CSS Lab, Bocconi University,

Milan, Italy

Dr Persephone DoupiNational Institute for Health and Welfare, Helsinki, Finland

Valgerdur GunnarsdottirDirectorate of Health Policy and Health Services, Ministry

of Health, Reykjavík, Iceland

Jacob HofdijkVice-President, European Federation for Medical Informat-

ics, Oegstgeest, The Netherlands

Dr Hannele HyppönenNational Institute for Health and Welfare, Helsinki, Finland

Dr Els MaeckelbergheExpert Centre for Ethics in Care, University Medical Centre

Groningen, The Netherlands

Professor John Mantas
Department of Nursing, University of Athens; Athens,
Greece(President, European Federation for Medical Informatics)



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Dr Reli MechtlerHead, Department of Health System Research, University

of Linz, Linz, Austria

Dr Francois MenneratHealth Informatics Consultant, Rix-Trébief, France

Professor George MihalasDepartment for Medical Informatics and Biophysics, Victor

Babes University of Medicine and Pharmacy, Timisoara, Roma-nia

Sonja MüllerEmpirica Gesellschaft für Kommunikations- und Technolo-

gieforschung mbHBonn, Germany

Professor Christian NøhrDepartment of Development and Planning, Aalborg Univer-

sity, Aalborg, Denmark

Dr Angelo Rossi MorieHealth Unit, Institute for Biomedical Technologies, Italian

National Research CouncilRome, Italy

Professor Elisabeth RynningDepartment of Law, Uppsala University, Uppsala, Sweden

Professor Peter Wells CBE FRSDistinguished Research Professor, Cardiff University,

Cardiff, United Kingdom

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[18] M. Rigby, P. Hill, A. Allman, Ensuring trust and governance inE-social care, in: P. Cunningham, M. Cunningham (Eds.),Collaboration and the Knowledge Economy: Issues,Applications, Case Studies, IOS Press, Amsterdam, 2008, pp.22–28.

[19] United Nations General Assembly: The UniversalDeclaration of Human Rights, United Nations, New York,1948 (available on http://www.un.org/en/documents/udhr/)(accessed 9 December 2010).

[20] J. Talmon, et al., STARE-HI – statement on reporting ofevaluation studies in health informatics, InternationalJournal of Medical Informatics 78 (1) (2009) 1–9.

[21] E. Ammenwerth, N.T. Shaw, Bad health informatics can kill –is evaluation the answer? Methods of Information inMedicine 44 (1) (2005) 1–3.

[22] European Commission, E-Health – making healthcare betterfor European citizens: An Action Plan for a Europeane-Health Area COM (2005) 356, Brussels, 2004.

[23] M. Rigby, Citizens, seamlessness, and care –inter-relationships and inter-operability, in: B. Blobel, E.Þ.Hvannberg, V. Gunnarsdóttir (Eds.), Seamless Care – Safe
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Social care informatics as an essential part of holistic health care: A call for action

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