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APPROACH patient council chair Jane Taylor speaks about the learnings from involving patient advocates in the project at IMI’s webinar on patient involvement

News 2021

On the 7th of October the funder of the APPROACH project – the Innovative Medicines Initiative (IMI), held a webinar about its impact on patient involvement in collaborative research projects. In the past years, IMI-funded initiatives have become evident game changers in the field of patient involvement. Jane Taylor, chair of the APPROACH patient council and one of the speakers at the recent IMI webinar, gave her testimony to this development – patient representatives are taking an increasingly more active role across research consortia and providing invaluable insights. Among others, patient advocates are included as members of patient advisory groups, advising on ethical issues, communication activities, clinical visits and documentation, all the while ensuring meaningful involvement of the patient perspective within the project.

Jane Taylor is the chair of the APPROACH patient council (PC) – an advisory group of patient representatives within the project. Jane has spent most of her professional life in education and until having to take ill health retirement 12 years ago, was a Senior lecturer in English at Manchester Metropolitan University in the UK. She now works part-time from home for the Open University. Jane has lived with different kinds of arthritis for over 30 years, having been diagnosed with rheumatoid arthritis aged 26 and having gone on to develop other MSK conditions including osteoarthritis (OA). As well as her own experience, she supports and cares for two close family members with a number of long term conditions.

Janes experiences and frustrations as both patient and carer led her to become involved in supporting and developing good practice in co-production in medical and healthcare research. Over the last 15 years she has contributed as a volunteer to a number of initiatives in this area, working with other patients/carers, researchers and funders to ensure the patient voice is fully integrated into research. Jane is also currently chairing Versus Arthritis Patient Insight Partners, a large group of patients/carers who help shape the research priorities of this UK charity and a trustee of ARMA, an umbrella charity for organizations supporting both patients and professionals in the area of MSK.

For me having the patient voice working with researchers in a genuine shared decision making process rather than in separate spheres is central to getting the best and most impactful research outcomes to benefit everyone.

Jane Taylor – chair of the APPROACH patient council, OA patient and carer

Patient involvement in APPROACH

At IMIs webinar Jane spoke about the research done in APPROACH, the way patient advocates have been included in the project, as well as their learnings from this experience. Jane explained that the APPROACH patient council contributed significantly to improving the clinical protocols used in the study. The council advised on the needs and interests of the patients and worked closely with clinicians to devise the protocols used across the 5 clinical centres included in the project. Moreover, the PC improved the organisation of the clinical visits making those as comfortable and suitable for the APRPOACH study participants as possible.

Importantly, the APPROACH PC is also instrumental in all communications about the project. Members of the PC advise on the patient information used, for example, within leaflets handed out to participants in the APPROACH study. They co-create the participant newsletters for APPROACH study participants that keep them informed on the progress of the study and explain the various aspects of the research done in the project. All in all, the PC provides the patient point of view to all communication and dissemination activities and materials, making the latter accessible and attractive to the people living with osteoarthritis.

Lastly, the APPROACH PC actively supported patient-doctor interactions, advising on the evaluation forms used for clinical visits and questionnaires which APPROACH study participants received regarding their experience with the study. Jane is happy to report that this has greatly improved both the science, but also retention in the trial.

Jane shares her experience with the project: The most important impact the APPROACH PC has had on the project research is that one which is the most difficult to quantify and measure – changing the conversations. Every year we had consortium meeting where we actively interacted with APPROACH researchers. We presented our perspective on living with OA. Gradually we found that people were talking differently in the room. We asked for glossaries of the scientific talks at these meeting, so that we could understand and follow the discussions as much as possible. With time, people started to open up and share ideas with us. We felt very integrated into the project. Its about that connection that you dont get if you are not actually there talking to people, asking questions and engaging in mutual co-production of the research. This is also very empowering to the patients.  As a patient there are many losses in your live, so sharing your experience so others can use it in a positive way can be empowering also for you. If you can make a difference and contribute to research and potentially new treatments, that is amazing. Many researchers work in labs and their own teams, so they dont get to see the whole person,  hear about the real life of OA patients. APPROACH makes this possible.

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