I was diagnosed with young onset Parkinson’s aged 32 in December 2014. My advocacy work includes voluntary positions as a Research Communication blogger for Parkinson’s UK, I’m also on the Research Support Network Development Team and Research Communication Team. Furthermore I have been involved in lay grant reviewing for research grants.
My full time employment is as a Data Analyst for an investment management firm. My professional qualifications include associate membership of the CISI, I also hold the first unit of the Investment Management Certificate and academically graduated with an honours degree in Economics from the University of Stirling in 2004.
The following has been paraphrased from an interview with Martin Taylor on August 13th, 2018.
(Click above to listen to the full audio version or click here for a downloadable version)
Why did you create the Parkinson’s Research Interest Group (PRIG)?
One reason was that I was volunteering with Parkinson’s UK giving feedback on a website to increase patient involvement in research, whilst well intentioned, the website was neither accessible nor regularly updated. I wasn’t convinced it was the right way to go and wanted to demonstrate how social media could be used as a more effective platform to get patients engaged in research.
I had also seen in other PD groups that there was a lot of misinformation and unfounded speculation out there. So I wanted to create a place which referenced sources of information that was more robust and evidence based and gave people a platform to discuss research.
Lastly, I wanted to create a place where patients and researchers could interact more with each other and share ideas to bridge the gap between the two communities and enhance mutual understanding.
Such internet groups are often a hotbed of bad ideas. Yet PRIG has done a good job of filtering those ideas out. What do you attribute that to?
I think we have been clear from the beginning as to what sort of content we allow, and ensuring that it comes from a credible source. Also, having people involved in the moderation and administration of the site that know the research has helped a lot.
Another decision we made was to not be a support group. From my experience, many of those groups become a pity-fest where people come on just to vent and talk about how bad they, or the person they are caring for, are doing. Whilstthere is definitely a place for groups that do this and indeed some of them are very good at what they do, I wanted something that was more constructive. To achieve that we have had to be quite ruthless at times with how we moderate the group, but in doing so we have kept the content in line with what we wanted.
Do you have any direction in mind for where you would like PRIG to go next?
I’d like to see more researchers getting involved. Perhaps they have a perception that they might get overwhelmed if they involve themselves in patient groups, or they want to maintain some level of objectivity and not get emotionally compromised by getting to know people who are in some cases really suffering. However, I think there is a lot for them to gain by joining such groups.
I would also like to see it become more of a think tank and try to actually generate ideas on how to influence research. It is still for the most part just a peer-sharing network where people just post the latest news and comment on it. But I think, given some of the people we have involved, it could actually become a place where we generate new ideas as well and try to take them forward.
Can you talk about why you believe it is important that the group remain independent?
One of the things I have noticed about the social media output from the Michael J. Fox Foundation or Parkinson’s UK is that they don’t tend to share news that they are not involved in. It’s a shame really since we are all supposedly working towards the same goal.
Remaining independent also allows us to be a sort of whole adviser where we can look across the whole field from an autonomous perspective. If we were to lose our independence we would likely be influenced in one direction or another.
What do you think the role of such organizations should be in organizing the community?
I think they could be doing more to share best practices. It is difficult because there is little consensus, but there still could be more sharing over topics like what is recommended in terms of diet and exercise.
In terms of coordinating the whole PD community, getting everyone going in the same direction is a lot like herding cats. People with PD have very diverse backgrounds and they want different things. But PD organizations could still be doing more, at the end of the day we all want to end this horrible condition and, in the meantime, make it as livable as possible for those that have it. That also goes for the people doing research, they need to think more collaboratively to speed things up.
If you were in the shoes of some of these organizations, what would you be doing differently?
I would continue trying to build shared platforms. It is difficult, I’ve been involved in these kind of discussions here in the UK. When we try to ask the YOPD (young-onset Parkinson’s disease) community what they want it is always a case of ‘what do you want? We don’t know. When do you want it? Now!’
Through discussions in the community we need to better frame what it is we actually want. Despite all of our differences, there is common ground to be found. For example, there is broad recognition that Parkinson’s is an umbrella term for a variety of different conditions and we need more research into which therapies might work better for which subtype of the disease. We need to get these ideas fully fleshed out and start taking them forward to really influence the research agenda.
If I could just add, I think patients need to be realistic about what their expectations are from research. There’s not going to be a single panacea that fixes everyone, and you can’t sit and wait for it either. You need to get involved and find ways to make an impact. You can’t expect anything to happen if you are not willing to make it happen. Join discussions and get involved. Doing nothing when you have an illness as serious as this is not really an option.
Thanks Martin, for your advocacy and involved work – not easy when you carry the weight of burden that you do.
You said ‘…..from the Michael J. Fox Foundation or Parkinson’s UK is that they don’t tend to share news that they are not involved in.’ That hits the spot of R&D, which in my humble opinion, is directed by the money. MJFF spend billions on research, but it’s the ‘interests’ invested in them that protect and steer the work being done, so it tends to be shrouded in secrecy. Maybe it’s also true that data protection is the ‘blanket’ used in discussing work outside their own group.
Fascinating article – thanks Ben and Martin!