Methods for involving older people in health research—a review of the literature

International Journal of Environmental Research and Public Health

Volumn 14, Issue 12, 2017, Pages

  Schilling, Imke ^a   Gerhardus, Ansgar ^a  

^a UNIVERSITY OF BREMEN   (Germany)

Author keywords

Diversity; Health research; Older people; Patient and public involvement; People with old age related conditions; PPI; Review

Indexed keywords

DIVERSITY INDEX; ELDERLY CARE; ELDERLY POPULATION; HEALTH CARE; LITERATURE REVIEW; PUBLIC HEALTH;

AGED; FEASIBILITY STUDY; GERIATRIC DISORDER; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; MEDICAL ETHICS; MEDICAL RESEARCH; REVIEW; SCIENTIST; PATIENT PARTICIPATION; RESEARCH;

AGED; HUMANS; PATIENT PARTICIPATION; RESEARCH;

EID: 85036532255     PISSN: 16617827     EISSN: 16604601     Source Type: Journal    
DOI: 10.3390/ijerph14121476     Document Type: Review

References (36)

1. Domecq, J.; Prutsky, G.; Elraiyah, T.; Wang, Z.; Nabhan, M.; Shippee, N.; Brito, J.; Boehmer, K.; Hasan, R.; Firwana, B., et al. Patient engagement in research: A systematic review. BMC Health Serv. Res. 2014, 14, 89.
2. Esmail, L.; Moore, E.; Rein, A. Evaluating patient and stakeholder engagement in research: Moving from theory to practice. J. Comp. Eff. Res. 2015, 4, 133–145.
3. Boote, J.; Baird, W.; Beecroft, C. Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy 2010, 95, 10–23.
4. Robinson, A. Patient and public involvement: In theory and in practice. J. Laryngol. Otol. 2014, 128, 318–325.
5. Brett, J.; Staniszewska, S.; Mockford, C.; Herron-Marx, S.; Hughes, J.; Tysall, C.; Suleman, R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient 2012, 7, 387–395.
6. Chalmers, I.; Glasziou, P. Avoidable waste in the production and reporting of research evidence. Lancet 2009, 374, 86–89.
7. Canadian Institutes of Health Research (CIHR). Patient Engagement Framework, Strategy for Patient-Oriented Research; Canadian Institutes of Health Research: Ottawa, ON, Canada, 2014.
8. Sandman, L.; Bond, K.; Hofmann, B. Exploring ethical rationales. In Patient Involvement in Health Technology Assessment; Facey, K., Ploug Hansen, H., Single, A., Eds.; Springer Nature: Singapore, 2017; Volume 1, pp. 17–29.
9. INVOLVE. Briefing Notes for Researchers: Involving the Public in nhs, Public Health and Social Care Research; INVOLVE: Eastleigh, UK, 2012.
10. Patient-Centered Outcomes Research Institute (PCORI). WhatWe Mean by Engagement. Available online: https://www.pcori.org/engagement/what-we-mean-engagement(accessed on 10 November 2017).
11. Boote, J.; Telford, R.; Cooper, C. Consumer involvement in health research: A review and research agenda. Health Policy 2002, 61, 213–236.
12. Brett, J.; Stanizewska, S.; Mockford, C.; Seers, K.; Herron-Marx, S.; Bayliss, H. The PIRICOM Study: A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patient and Public Involvement in Health and Social Care Research; University ofWarwick: Warwick, UK, 2010.
13. Oliver, S.R.; Rees, R.W.; Clarke-Jones, L.; Milne, R.; Oakley, A.R.; Gabbay, J.; Stein, K.; Buchanan, P.; Gyte, G. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect. 2008, 11, 72–84.
14. National Institute for Health Research (NIHR). Going the Extra Mile: Improving the Nation’s Health andWellbeing through Public Involvement in Research; National Institute for Health Research: London, UK, 2015.
15. Boyle, D.; Slay, J.; Stephens, L. Public Services Inside Out. Putting Co-Production into Practice; NESTA: London, UK, 2010.
16. Bagley, H.J.; Short, H.; Harman, N.L.; Hickey, H.R.; Gamble, C.L.; Woolfall, K.; Young, B.; Williamson, P.R. A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials— A work in progress. Res. Involv. Engagem. 2016, 2, 1–14.
17. INVOLVE. Diversity and Inclusion: What’s It about and Why Is It Important for Public Involvement in Research? INVOLVE: Eastleigh, UK, 2012.
18. Rivett, E. Research involving people with dementia: A literature review. Work. Older People 2017, 21, 107–114.
19. Shura, R.; Siders, R.A.; Dannefer, D. Culture change in long-term care: Participatory action research and the role of the resident. Gerontologist 2011, 51, 212–225.
20. Holroyd-Leduc, J.; Resin, J.; Ashley, L.; Barwich, D.; Elliott, J.; Huras, P.; Légaré, F.; Mahoney, M.; Maybee, A.; McNeil, H., et al. Giving voice to older adults living with frailty and their family caregivers: Engagement of older adults living with frailty in research, health care decision making, and in health policy. Res. Involv. Engagem. 2016, 2, 23.
21. Iliffe, S.; McGrath, T.; Mitchell, D. The impact of patient and public involvement in the work of the dementias & neurodegenerative diseases research network (DeNDRoN): Case studies. Health Expect. 2013, 16, 351–361.
22. Bundesarbeitsgemeinschaft der Klinisch-Geriatrischen Einrichtungen e. V.; Deutsche Gesellschaft für Geriatrie e. V.; Deutsche Gesellschaft für Gerontologie und Geriatrie e. V. Abgrenzungskriterien der Geriatrie. 2004. Available online: http://www.geriatrie-drg.de/public/docs/Abgrenzungskriterien_Geriatrie_V13_ 16-03-04.pdf(accessed on 10 November 2017).
23. Moher, D.; Liberati, A.; Tetzlaff, J.; Altman, D.G.; The, P.G. Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Med. 2009, 6, e1000097.
24. Bartlett, R.; Hick, C.; Houston, A.; Gardiner, L.; Wallace, D. Privileging place: Reflections on involving people with dementia in a residency. Dementia (Lond. Engl.) 2015, 14, 788–799.
25. Burnell, K.J.; Selwood, A.; Sullivan, T.; Charlesworth, G.M.; Poland, F.; Orrell, M. Involving service users in the development of the support at home: Interventions to enhance life in dementia carer supporter programme for family carers of people with dementia. Health Expect. 2015, 18, 95–110.
26. Giebel, C.; Roe, B.; Hodgson, A.; Britt, D.; Clarkson, P. Effective public involvement in the HoST-D programme for dementia home care support: From proposal and design to methods of data collection (innovative practice). Dementia 2017.
27. Hassan, L.; Swarbrick, C.; Sanders, C.; Parker, A.; Machin, M.; Tully, M.P.; Ainsworth, J. Tea, talk and technology: Patient and public involvement to improve connected health ‘wearables’ research in dementia. Res. Involv. Engagem. 2017, 3, 12.
28. Heaven, A.; Brown, L.; Foster, M.; Clegg, A. Keeping it credible in cohort multiple randomised controlled trials: The community ageing research 75+ (CARE 75+) study model of patient and public involvement and engagement. Res. Involv. Engagem. 2016, 2, 30.
29. Kelly, S.; Lafortune, L.; Hart, N.; Cowan, K.; Fenton, M.; Brayne, C. Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda. Age Ageing 2015, 44, 985–993.
30. Stevenson, M.; Taylor, B.J. Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study. Dementia 2017, 1–12.
31. Tanner, D. Co-research with older people with dementia: Experience and reflections. J. Ment. Health 2012, 21, 296–306.
32. Fudge, N.; Wolfe, C.D.A.; McKevitt, C. Involving older people in health research. Age Ageing 2007, 36, 492–500.
33. National Research Ethics Service (NRES); INVOLVE. Patient and Public Involvement in Research and Research Ethics Committee Review; INVOLVE and NRES: Eastleigh and London, UK, 2009.
34. Dewing, J. Participatory research: A method for process consent with persons who have dementia. Dementia 2007, 6, 11–25.
35. Ives, J.; Damery, S.; Redwod, S. PPI, paradoxes and Plato: Who’s sailing the ship? J. Med. Ethics 2012, 39, 181–185.
36. Staley, K. There is no paradox with PPI in research. J. Med. Ethics 2013, 39, 186–187.