Objective: Developing a model for international collaboration on patient engagement with patient organisations and industry.

Background: Involving people affected by health conditions in research is key to delivering high quality, successful research that is relevant to patient’s needs [1]. As patient engagement becomes embedded as an essential element of the research process, patient organisations play a key role in supporting patient engagement in research, providing expert advice and guidance on how to successfully work with patients to deliver better research outcomes [2]. Parkinson’s UK and Parkinson’s Foundation have both developed programmes to support researchers and people affected by Parkinson’s to work together, and over the last five years have been working in partnership to develop and share good practice. In 2018, the two organisations began an international collaboration with pharmaceutical company UCB to work with people affected by Parkinson’s on clinical outcomes assessment research.

Method: Six people affected by Parkinson’s (3 UK and 3 US) were recruited as patient advisors for the project. All had undergone training through their respective patient organisation’s involvement programme. Advisory group meetings were held over Skype and involved the research team, patient advisors and the patient involvement leads at Parkinson’s UK and Parkinson’s Foundation. Patient involvement throughout the project was planned and assessed using the PFMD patient engagement quality guidance.

Results: This ongoing project provides a model for international collaboration on patient engagement in Parkinson’s research. Patient advisors have been involved at various levels throughout the project, from information sharing and consultation to co-production and joint decision-making. Parkinson’s UK and Parkinson’s Foundation have played a key role in supporting the research team and patient advisors to work together, drawing on each other’s best practices to optimise patient engagement. The international scope of the project has helped ensure a variety of perspectives are incorporated to better meet the needs of the global Parkinson’s community.

Conclusion: It is imperative that new therapies for Parkinson’s meet the needs of the global community. International collaborations amongst patient organisations are key to advance this effort. As best practice models emerge, it will be important to expand this beyond Western countries.

References: [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. [2] Staley K. An evaluation of a pilot project of Patient and Public Involvement in research at Parkinson’s UK. Edited by Parkinson’s UK. 2016. London. 2016.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-organisation-collaboration-to-advance-patient-engagement-in-parkinsons-research/