New paper on the affordances of clinical research participation
On 18-19 October, IMI organised its Stakeholder Forum 2017 in Brussels under the theme ‘Open innovation’. On the first day of the event, IMI was looked through the lens of open innovation and the results that IMI is delivering were discussed. The day was focused on the IMI’s public-private partnership model, some IMI flagship projects and the IMI future strategies. On the second day of the Stakeholder Forum, two parallel tracks focused on examples of IMI’s open innovation in practice. The first track was on patient forum co-developed by IMI and the European Patients’ Forum (EPF) and was focused on patient engagement and collaboration. The second track was on the microbiome, with a view to seeing how IMI could best work in this area.
We’re very thankful that Eileen, a Member of the EPAD Research Participant Panel, was willing to come along to the IMI Stakeholder Forum to talk about her actual involvement in the research and her contribution via the panel.
Here are Eileen’s impressions about the EPAD project and its Research Participant Panel:
“The Participant Panel is in the early stages. We have met with each other and Prof. Craig Ritchie twice, to begin asking questions about the EPAD project, the role of the Participant Panel and how that can be achieved.
To go back to the beginning, I think the invitation to become a volunteer in the EPAD project came by letter or phone (I assumed I had been asked to participate because my parents had Alzheimer’ disease). Previously, I had taken part in Generation Scotland and The Million Women Study.
Subsequent contact was always helpful, with parking space arranged for us and one of the EPAD team even coming out to open a barrier which we couldn’t get to operate!
The first visit to Edinburgh for the first tests was fascinating. All of the volunteers agreed that the young team tried their best to be welcoming and reassuring. The NHS personnel were also impressive, kind and so competent. The MRI scan let me have a lie down and a rest and the lumbar puncture was done in textbook fashion with the young doctor talking me through the procedure. We even managed an interesting conversation.
I was familiar with the cognitive tests (e.g. picture recognition, recall of information). Although the computer screen tests were trickier, I found out later that other people had thought the same, so that was OK.
All the participants had thorough medical examinations – 4 out of 7 discovered previously unidentified conditions which could then be treated – 1 out of 7 was already taking medication as a result of being on a clinical trial for another condition. We were all grateful to the EPAD team’s prompt response to the apprehension about having a lumber puncture done. A video was put on the website to demonstrate the procedure in the hope that more information would help people feel more relaxed.
These were unlooked for positive outcomes to taking part in research. From the brief conversations with other volunteers, we all feel that this research to help prevent Alzheimer’s dementia is very important and we are very glad to be able to contribute. Some of us have watched loved ones disappear before our eyes, while still alive with this disease. We want to stand with the young academics and researchers helping to find a cure or amelioration for it.
Research has done so much to advance treatment in heart disease and cancers. Hopefully EPAD’s assault on the prevention and cure of Alzheimer’s dementia will bring similar results.
Attending the 3rd EPAD General Assembly Meeting in Stockholm as the first Research Participant was a wonderful opportunity to see and hear the hardworking application and enthusiasm of the EPAD family, as Prof Ritchie calls us.
There was so much debate and discussion, sharing of data and encouragement to meet targets.
Several people came forward to thank me for taking part but all I wanted to do was thank them for being part of this huge endeavour. Knowing we are listened to gives us a great deal of faith in the team.
I look forward to the next conference in Brussels and to sharing news from that with everyone when I get back.”
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