It is all-consuming, this Parkinson’s is. You know that very well. You are an expert in it if you have it or care for someone who is. So why does research seem so remote from you?
I think people living with Parkinson’s have always felt that. But there are real signs that this is changing.
The RSN DT, which is largely made up of volunteers, many with Parkinson’s, took a couple of initiatives some time ago to get more PwPs involved and participating in research. These are now bearing fruit. It has required a couple of staff appointments at National Office but I am pleased to say that both staff members have made a real difference.
On the Involvement side – you may know it as PPI (Patient and Public Involvement, not the insurance one!) – the aim has been to get more ordinary people involved in the running of research. (Participation, on the other hand, is to do with taking part in studies and trials as subjects. More about that later).
To date a lot has been achieved in getting volunteers to:
- edit plain English summaries of research projects
- assessing applications for research grants
- particiapte in Fous Groups (often through teleconferences).
Soon there should be lay volunteers on boards which initiate and manage the projects themselves.
There is also an on-line involvement panel of people who communicate by email.
All this is not country-wide yet and so the East Midlands has largely not been involved. You must keep agitating if you are interested! You could do this by going to the Have Your Say In Research page on the Parkinson’s UK website: click on http://www.parkinsons.org.uk/content/have-your-say-research
PPI training for volunteers is being organised and resources are being updated. Members will be actively contacted more widely soon – look out for this. Or express your interest now through the above link.
Participating in research trials and studies
More and more people are doing this. The problem is that a proper ‘Exchange’ has not been established. This could change because there is a proposal for Parkinson’s UK to set up a ‘Research Register’. People would be able to register themselves as being interested in participating in research studies so that projects could use the list for recruitment. It sounds straightforward – as well as overdue – but because personal data would be stored it is subject to scrutiny by the Ethics Authority and needs to be carefully designed and secured. The decision should be made this month. It would be good to have a ‘one stop shop’ where PwPs could be matched efficiently with projects needing them.
What Else The RSN DT talked about?
There was quite a bit more that we discussed at the meeting on 26th July. I have mentioned the topics before in earlier articles and blogs.
Other RSN groups, new and existing, are making steady progress and steps are being taken to make sure research events that are being put on are made know to everyone who might be interested in travelling to attend them.
The Research Director is also making great progress in promoting and coordinating Parkinson’s research in this country and globally. Effective research takes a lot of money and proper strategy, persuasion and coordination is required to get it done. Only certain types of biotech companies have the ability and the resources to take on, say, a large, expensive cohort study that needs to go on for several years and they need the assurance that the groundwork is sound and that the objectives are worthwhile. Coordination, collaboration and investment are needed. After huge effort Parkinson’s UK is now well placed to play a crucial role. It has made an impressive start.
That will do for the moment. If you want to know more about what the RSN DT is doing – and there is lots more – just leave a comment below about your particular interest.