Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting

R Snow, J C Crocker, S Crowe, R Snow, J C Crocker, S Crowe

Abstract

Plain english summary: Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people's ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research.

Abstract: Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients' and carers' contributions to priority setting. When discussions about a project's remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.

Keywords: Impact; PPI; Patient and carer involvement; Patient involvement; Priority setting; Research agenda; Research priorities; Service-user involvement.

References

    1. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156–65.
    1. Entwistle V, Calnan M, Dieppe P. Consumer involvement in setting the health services research agenda: persistent questions of value. J Health Serv Res Policy. 2008;13(suppl 3):76–81.
    1. Banfield MA, Barney LJ, Griffiths KM, Christensen HM. Australian mental health consumers’ priorities for research: qualitative findings from the SCOPE for Research project. Health Expect. 2014;17(3):365–75.
    1. Staley K. Exploring impact: public involvement in NHS, public health and social care research. INVOLVE, Eastleigh. 2009
    1. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.
    1. Staley K, Hanley B. Scoping research priority setting (and the presence of PPI in priority setting) with UK clinical research organisations and funders. James Lind Alliance. December 2008.
    1. Abma TA. Patients as partners in a health research agenda setting the feasibility of a participatory methodology. Eval Health Prof. 2006;29(4):424–39.
    1. Caron-Flinterman JF, Broerse JEW, Bunders JFG. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med. 2005;60(11):2575–84.
    1. Whear R, Thompson‐Coon J, Boddy K, Papworth H, Frier J, Stein K. Establishing local priorities for a health research agenda. Health Expect. 2012
    1. Cheyne H, McCourt C, Semple K. Mother knows best: developing a consumer led, evidence informed, research agenda for maternity care. Midwifery. 2013;29(6):705–12.
    1. Fleurence R, Selby JV, Odom-Walker K, Hunt G, Meltzer D, Slutsky JR, et al. How the patient-centered outcomes research institute is engaging patients and others in shaping its research agenda. Health Aff. 2013;32(2):393–400.
    1. Hinckley J, Boyle E, Lombard D, Bartels-Tobin L. Towards a consumer-informed research agenda for aphasia: preliminary work. Disabil Rehab. 2014;36(12):1042–50.
    1. Schipper K, Dauwerse L, Hendrikx A, Leedekerken J, Abma T. Living with Parkinson’s disease: priorities for research suggested by patients. Parkinsonism Related Disor. 2014;20(8):862–6.
    1. Stewart RJ, Caird J, Oliver K, Oliver S. Patients’ and clinicians’ research priorities. Health Expect. 2011;14(4):439–48.
    1. Staniszewska S, Adebajo A, Barber R, Beresford P, Brady LM, Brett J, et al. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consumer Studies. 2011;35(6):628–32.
    1. JLA. The James Lind Alliance guidebook. James Lind Alliance, Oxford. 2013. . Accessed January 2015.
    1. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003–2013. J Royal Soc Med. 2013;106(12):0141076813493063.
    1. Gadsby R, Snow R, Daly A, Crowe S, Matyka K, Hall B et al. Setting research priorities for type 1 diabetes. Diabetic Med. 2012;29(10):1321–6.
    1. Cresswell J, Plano C. Designing and conducting mixed methods research. 2011.
    1. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72.
    1. Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess. 2004;8(15):154pp.
    1. Batchelor J, Ridd M, Clarke T, Ahmed A, Cox M, Crowe S, et al. The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritize important research questions for the treatment of eczema. British J Dermatology. 2013;168(3):577–82.
    1. Elberse J, Laan D, de Cock BT, Teunissen T, Broerse J, de Boer W. Patient involvement in agenda setting for respiratory research in the Netherlands. Eur Respiratory J. 2012;40(2):508–10.
    1. Lophatananon A, Tyndale-Biscoe S, Malcolm E, Rippon HJ, Holmes K, Firkins LA, et al. The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation. BJU Int. 2011;108(7):1040–3.
    1. Vortruba M, Group S-PS The UK Sight Loss and Vision Priority Setting Partnership (SLV-PSP): vision research questions prioritised by patients and health care professionals. Acta Ophthalmologica. 2013;91(s252):0.

Source: PubMed

Sponsor e collaboratori

Condizioni mediche

Interventi farmacologici

3
Sottoscrivi