An interactive workshop at the Patient Engagement (PE) Open Forum offered a chance to hear how patient engagement works in practice.
Sharing real-world experiences of patient engagement initiative is a valuable way to support the adoption of PE initiatives. The PE Open Forum in Brussels dedicated a session to learnings from good practices and how they can be applied by various stakeholders.
Initiatives were presented by industry, a patient organisation and national representatives to offer a broad range of examples of how the Patient Engagement Quality Guidance (PEQG) performs in practice. Led by Chi Pakarinen and Anne Marie Hamoir from PFMD, it featured presentations by Heidi Muller and Laurence Maes from Janssen Pharmaceuticals, Natasha Ratcliffe of Parkinson’s UK, and Søren Skovlund from the University of Aalborg.
The speakers from Janssen delivered two case studies on engaging patients with lymphoma and with inflammatory bowel disease (IBD); Parkinson’s UK offered their experience working with United Neuroscience, a biotech company, to set up a patient advisory group to provide input on research programmes; and Mr Skovlund presented a novel PE initiative applied in the national context in Denmark. Participants then divided into groups for a more in-depth discussion on the factors to consider when implementing the Quality Guidance in their own work.
Transparency, sharing experiences and cooperation are essential to meaningful patient engagement, according to the group discussing engaging people with lymphoma and IBD. The group emphasised the need to build trust, mutual respect and understanding. This takes time, some compromises, and a willingness to step into each other’s shoes. It was also acknowledged that the evolving nature of industry-patient collaborations requires compliance regulations to be revisited.
The discussion led by Parkinson’s UK highlighted the importance of seeking patient input early in the process when they can help to shape study protocols. Participants also addressed practical issues such as reimbursement and contracting, as well as the need for basic literacy support for patients and PE training for scientists. The challenges of identifying relevant experts and patient advocates that are representative of the Parkinson’s population were also discussed. Data ownership and intellectual property rights should also be clarified ahead of any formal collaboration, it was agreed.
Mr Skovlund’s group explored how patients benefit from participating in PE initiatives. The importance of sharing clear information, tailored to non-experts, was emphasised. It is essential that collaborators have a shared purpose if they are to achieve their common goals, it was noted. Finally, to ensure PE initiatives are sustainable and of a high quality, it is vital to find sponsors and use a scientific approach to engagement.
The session was an ideal opportunity to showcase how the 7 PE Quality Criteria devised by PFMD can be applied in various settings. Not only did it highlight practical hurdles that users may need to overcome when rolling out PE initiatives, it helped participants to see that the criteria can be implemented by a range of stakeholders in the private and not-for-profit setting.
Summaries from the presented initiatives from Janssen, Parkinson’s UK and Mr Skovlund/ Uni of Aalborg:
- Patient and public involvement advisory group for Parkinson’s clinical trials programme
- Binder for Lymphoma Patients
- Co-created videos to provide practical advice to patients living with IBD
- Using the Patient Engagement Quality Guidance to develop a national diabetes PROM intervention for standard care