Toward Common Data Elements for International Research in Long-term Care Homes: Advancing Person-Centered Care

Published:February 27, 2019DOI:


      To support person-centered, residential long-term care internationally, a consortium of researchers in medicine, nursing, behavioral, and social sciences from 21 geographically and economically diverse countries have launched the WE-THRIVE consortium to develop a common data infrastructure. WE-THRIVE aims to identify measurement domains that are internationally relevant, including in low-, middle-, and high-income countries, prioritize concepts to operationalize domains, and specify a set of data elements to measure concepts that can be used across studies for data sharing and comparisons. This article reports findings from consortium meetings at the 2016 meeting of the Gerontological Society of America and the 2017 meeting of the International Association of Gerontology and Geriatrics, to identify domains and prioritize concepts, following best practices to identify common data elements (CDEs) that were developed through the US National Institutes of Health/National Institute of Nursing Research's CDEs initiative. Four domains were identified, including organizational context, workforce and staffing, person-centered care, and care outcomes. Using a nominal group process, WE-THRIVE prioritized 21 concepts across the 4 domains. Several concepts showed similarity to existing measurement structures, whereas others differed. Conceptual similarity (convergence; eg, concepts in the care outcomes domain of functional level and harm-free care) provides further support of the critical foundational work in LTC measurement endorsed and implemented by regulatory bodies. Different concepts (divergence; eg, concepts in the person-centered care domain of knowing the person and what matters most to the person) highlights current gaps in measurement efforts and is consistent with WE-THRIVE's focus on supporting resilience and thriving for residents, family, and staff. In alignment with the World Health Organization's call for comparative measurement work for health systems change, WE-THRIVE's work to date highlights the benefits of engaging with diverse LTC researchers, including those in low-, middle-, and high-income countries, to develop a measurement infrastructure that integrates the aspirations of person-centered LTC.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of the American Medical Directors Association
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • McGilton K.S.
        • Bowers B.J.
        • Heath H.
        • et al.
        Recommendations from the International Consortium on Professional Nursing Practice in Long-Term Care Homes.
        J Am Med Dir Assoc. 2016; 17: 99-103
        • Rolland Y.
        • Resnick B.
        • Katz P.R.
        • et al.
        Nursing home research: The first International Association of Gerontology and Geriatrics (IAGG) Research Conference.
        J Am Med Dir Assoc. 2014; 15: 313-325
        • Redeker N.S.
        • Anderson R.A.
        • Bakken S.
        • et al.
        Advancing symptom science through use of common data elements.
        J Nurs Scholarsh. 2015; 47: 379-388
        • Papanicolas I.
        • Kringos D.
        • Klazinga N.S.
        • Smith P.C.
        Health system performance comparison: New directions in research and policy.
        Health Policy. 2013; 112: 1-3
        • US Department of Health and Human Services National Institutes of Health/National Institute on Aging, World Health Organization
        Global Health and Aging.
        National Institutes of Health, Bethesda, MD2011
        • The American Geriatrics Society Expert Panel on Person-Centered Care
        Person-centered care: A definition and essential elements.
        J Am Geriatr Soc. 2016; 64: 15-18
        • Edvardsson D.
        • Innes A.
        Measuring person-centered care: A critical comparative review of published tools.
        Gerontologist. 2010; 50: 834-846
        • Castle N.G.
        • Ferguson J.C.
        What is nursing home quality and how is it measured?.
        Gerontologist. 2010; 50: 426-442
        • Tolson D.
        • Rolland Y.
        • Katz P.R.
        • et al.
        An international survey of nursing homes.
        J Am Med Dir Assoc. 2013; 14: 459-462
        • US Department of Health and Human Services
        Design for nursing home compare five-star quality rating system: Technical users’ guide. Centers for Medicare and Medicaid Services, Author.
        (2018. Available at:)
        • Ekman I.
        • Swedberg K.
        • Taft C.
        • et al.
        Person-centered care—Ready for prime time.
        Eur J Cardiovasc Nur. 2011; 10: 248-251
        • Cesari M.
        • Araujo de Carvalho I.
        • Amuthavalli Thiyagarajan J.
        • et al.
        Evidence for the domains supporting the construct of intrinsic capacity.
        J Gerontol A Biol Sci Med Sci. 2018; 73: 1653-1660
        • NHS England/Long Term Care Team
        Toolkit for general practice in supporting older people living with frailty. 06509.
        (2017. Available at:)
        • World Health Organization
        World Report on Ageing and Health.
        World Health Organization, Geneva, Switzerland2015
        • International Organization for Standardization
        Information technology - Metadata registries (MDR) - Part 1: Framework (ISO/IEC Standard No. 11179–1).
        International Organization for Standardization, Geneva, Switzerland2015
        • International Organization for Standardization
        ISO Action Plan for Developing Countries 2016-2020.
        International Organization for Standardization, Geneva, Switzerland2016
        • United Nations General Assembly
        70/1 Transforming our world: The 2030 agenda for sustainable development.
        • ESSENCE on Health Research
        Seven principles for strengthening research capacity in low and middle income countries: Simple ideas in a complex world, in ESSENCE Good practice document series.
        TDR/World Health Organization, Geneva, Switzerland2014
        • Harvey N.
        • Holmes C.A.
        Nominal group technique: An effective method for obtaining group consensus.
        Int J Nurs Pract. 2012; 18: 188-194
        • McMillan S.S.
        • King M.
        • Tully M.P.
        How to use the nominal group and Delphi techniques.
        Int J Clin Pharm. 2016; 38: 655-662
        • Allen J.
        • Dyas J.
        • Jones M.
        Building consensus in health care: A guide to using the nominal group technique.
        Br J Community Nurs. 2004; 9: 110-114
        • Wallace S.J.
        • Worrall L.
        • Rose T.
        • et al.
        Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF.
        Disabil Rehabil. 2017; 39: 1364-1379
        • World Health Organization
        Decision-making for guideline development at WHO, in WHO Handbook for Guideline Development.
        World Health Organization, Geneva, Switzerland2014
        • Dewar B.
        • MacBride T.
        Developing caring conversations in care homes: An appreciative inquiry.
        Health Soc Care Community. 2017; 25: 1375-1386
        • Creswell J.
        • Plano Clark V.
        Designing and Conducting Mixed Methods Research.
        3rd ed. Sage, Thousand Oaks, CA2018
        • Fielding N.G.
        Triangulation and mixed methods designs: Data integration with new research technologies.
        J Mixed Methods Res. 2012; 6: 124-136
        • Hirdes J.P.
        • Ljunggren G.
        • Morris J.
        • et al.
        Reliability of the interRAI suite of assessment instruments: A 12-country study of an integrated health information system.
        BMC Health Serv Res. 2008; 8: 277
        • Castle N.
        • Engberg J.
        Organizational characteristics associated with staff turnover in nursing homes.
        Gerontologist. 2006; 46: 62-73
        • Estabrooks C.A.
        • Hoben M.
        • Poss J.W.
        • et al.
        Dying in a nursing home: Treatable symptom burden and its link to modifiable features of work context.
        J Am Med Dir Assoc. 2015; 16: 515-520
        • Backman A.
        • Sjogren K.
        • Lindkvist M.
        • et al.
        Towards person-centredness in aged care—Exploring the impact of leadership.
        J Nurs Manag. 2016; 24: 766-774
        • US Department of Health and Human Services
        Reform of requirements for long-term care facilities; Proposed Rule. Centers for Medicare & Medicaid Services, Editor.
        (2015. Available at:) (Federal Register, July 16)
        • Carpenter I.
        • Hirdes J.P.
        Using interRAI assessment systems to measure and maintain quality of long-term care, in A Good Life in Old Age? Monitoring and Improving Quality in Long-Term Care.
        OECD/European Commission, Paris2015
        • National Health Service
        “Harm Free Care”: A New Mindset in Patient Safety Improvement: Learning from the Safety Express Pilot. NHS0013.
        (2012. Available at:)
        • European Centre for Social Welfare Policy and Research
        • et al.
        Measuring Progress: Indicators for Care Homes.
        (European Centre for Social Welfare Policy and Research) Austria, Vienna2010
        • Rockwood K.
        • Mitniski A.
        Resilience and frailty: Further steps best taken together.
        Eur Geriatr Med. 2015; 6: 405-407
        • Epstein J.
        • Santo R.M.
        • Guillemin F.
        A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus.
        J Clin Epidemiol. 2015; 68: 435-441
        • Byrne B.M.
        Adaptation of assessment scales in cross-national research: Issues, guidelines, and caveats.
        Int Perspect Psychol. 2016; 5: 51-65
        • UK National Institute for Health Research
        National Standards for Public Involvement in Research V1.
        (2018. Available at:)
        • Huber M.
        • van Vliet M.
        • Giezenberg M.
        • et al.
        Towards a “patient-centred” operationalisation of the new dynamic concept of health: A mixed methods study.
        BMJ Open. 2016; 6: e010091