Publications with patient research partners
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 patient research partner contributions to publications
Help-Seeking Behaviour Questionnaire Development
Help-Seeking Behaviour Questionnaire Development
PRPs have been co-authors on peer-reviewed publications, recognising their intellectual contributions.
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
Social interactions on their influence on help-seeking behaviour
Social interactions on their influence on help-seeking behaviour
PRPs have helped identify key research priorities, such as understanding help-seeking behaviour.
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
PRPs and International Collaborations (e.g., EULAR)
PRPs and International Collaborations (e.g., EULAR)
PRPs have helped shape European guidelines and terminology through involvement with EULAR (The European League Against Rheumatism).
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
PRP Career Progression – Case Example: Dr. Marie Falahee
PRP Career Progression – Case Example: Dr. Marie Falahee
Dr. Falahee began as a PRP and is now a full-time academic, highlighting the pathway from involvement to leadership.
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
International PRP Involvement in European Research
International PRP Involvement in European Research
Patient partners from multiple countries have contributed to collaborative European research initiatives.
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