Patient/public research partners (PRPs) provide valuable and robust contributions to a wide range of research activities, including funding applications, design of research materials, research design, interpretation of research findings, and presentation of findings.
Examples of projects that benefit from PRP involvement can be found in Current Research Projects
Our Patient Research Partners (PRPs) have been actively involved as steering committee members for several projects, and their intellectual contribution has been recognised through authorship of published research papers. For example (PRPs are highlighted in bold):
- Stack, R. J., Mallen, C. D., Deighton, C., Kiely, P., Shaw, K. L., Booth, A., Kumar, K., Thomas, S., Rowan, I., Horne, R., Nightingale, P., Herron-Marx, S., Jinks, C., DELAY Study Syndicate and Raza, K. (2015), The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis. Health Expectations, 18: 2340–2355. doi: 10.1111/hex.12203
Our PRPs have also highlighted their own research priorities, one of which was addressed in the following paper:
- Tiwana, R., Rowland, J., Fincher, M., Raza, K. and Stack, R. J. (2015), Social interactions at the onset of rheumatoid arthritis and their influence on help-seeking behaviour: A qualitative exploration. British Journal of Health Psychology, 20: 648–661. doi: 10.1111/bjhp.12134
Our PRPs have also made ground-breaking contributions to international organisations such as The European League Against Rheumatism (EULAR), which represents people with arthritis/rheumatism, and rheumatology health professional and scientific societies across all the European nations. For example, the influence of PRPs in the development of EULAR recommendations is described in:
- Gerlag, D.M., Raza, K., van Baarsen, L.G., Brouwer, E., Buckley, C.D., Burmester, G.D., Gabay, C., Catrina, A.I., Cope, A.P., Cornelis, F., Dahlqvist, S.R., Emery, P., Eyre, S., Finckh, A., Gay, S., Hazes, J.M., van Mil, A.V.H, Huizinga, T.W.J, Klareskog, L., Kvien, T.K., Lewis C., Machold, K.P., Rönnelid, J., Schaardenburg, D.V., Schett, G., Smolen, J.S., Thomas, S., Worthington, J, Tak, P.P.(2012). EULAR recommendations for terminology and research in at risk of rheumatoid arthritis: report from the Study Group for Risk Factors for Rheumatoid Arthritis. Annals of the Rheumatic Diseases, 71: 638–41 doi:10.1136/annrheumdis-2011-200990
Dr. Marie Falahee, one of the academic leads of R2P2 started working with the RRG as a patient research partner on various projects before ultimately being recruited to a fulltime post at the University. Her contributions as a patient research partner have been acknowledged in the following paper:
- Simons, G., Kumar, K., Mallen, C.D., Stack, R.J., &Raza, K. (2015). A Qualitative Investigation of the Barriers to Help-seeking Among Members of the Public Presented with Symptoms of New-onset Rheumatoid Arthritis. The Journal of Rheumatology DOI:10.3899/jrheum.140913
For research projects involving a consortium of researchers in different countries, our patient research partners are also international. Some will be local and part of R2P2, others belong to our wider network. The following paper describes such a project. Some of the patient research partners involved are also co-authors.
- Birch, R., Simons, G., Wähämaa, H. McGrath, CM., Johansson, EC., Skingle, D. Bayliss, K., Starling, B., Gerlag, DM., Buckley, CD., Stack, RJ., Raza, K. and Falahee, M. Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project. Res Involv Engagem 6, 6 (2020). https://doi.org/10.1186/s40900-020-0178-7