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Question: How many people does it take to create a therapy intervention?
September has rushed past, perhaps marked for you by the beginning of the academic year, a longing look at the heating dial in your house, or just a bit of well-needed rain in the garden.
For us, September marked 1 year since the official launch of “Better Conversations with Parkinson’s”.
This project, generously funded by Parkinson’s UK and carried out at University College London, has transformed over the last year from a grant proposal to a living and breathing research project, sustained by the work of our team, advisory groups, and junior researchers. Here we take stock of what we have achieved over the last year...
Answer: two advisory groups, 6 people living with Parkinson's, four family members, a research team, 41 people engaging via Twitter, experts at a Better Conversations conference...
And a lot of time... our coproduction group alone met for over 90 hours of meetings over 3 months to decide together on what exactly "Better Conversations with Parkinson's" should look like.
The first thing we should celebrate, therefore, is collaboration
Our project is being overseen by a ‘steering group’ of experts, who have contributed to getting our proposal through an ethics board, advised on assessment procedures for participants, and are looking towards how we analyse and share results from this study.
A separate 'coproduction group' have created "Better Conversations with Parkinson's" (BCP) as it is today. They made decisions on everything from terminology and phrasing used in information, to what techniques should be used within sessions to achieve meaningful therapeutic change. Their decisions were based on and complemented by a treasure trove of additional expertise from: family members of people living with Parkinson's; speech and language therapists and clinical academics reached via polls on Twitter; and discussions amongst experts at a Better Conversations conference.
The contributions of these advisory groups and others have been absolutely invaluable in shaping our project. We have learnt a huge amount during the process of working with our stakeholders (more to follow on this in a future blog…) and are filled with gratitude for all their time and contributions.
Secondly: best laid plans...
Whilst we recognise best laid plans may go awry, we have worked with our steering group to plan our research in significant detail. This was necessary in order to gain ethical approval – which we achieved in May of this year. It is also necessary to have a clear plan that we can share transparently with others. Cue our protocol, which has been submitted to the journal JMIR Research Protocols. You can see a pre-print here: http://preprints.jmir.org/preprint/41416
It is hard to break the research process into discrete events. However, for those interested in timescales for a pilot project of this kind, here is a visual summarising some of our key focuses over the last year:
Finally, we must celebrate... our participants!
A year’s hard work culminated in our first set of participants starting Better Conversations with Parkinson’s in September. The process that they are following has been carefully constructed by the research team and all our collaborators. The participants will benefit from their expertise, from the flyer that they read to first learn about the project, to the way that the researcher asks them to video day to day conversations, to the therapy tasks they are undertaking.
What a humbling reminder of how dependent research is on the time, expertise and consideration of others - not least our research participants.
It definitely takes a family to raise a new intervention!
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