This short post is just an idea I want to throw out their into the aether for someone/anyone to chew on.
Being diagnosed with Parkinson’s throws an individual into a hypothetical ‘foreign land’, where people (doctors and members of the affected community) talk in a strange new dialect about medication, brain chemicals called dopamine and accumulation of proteins that sound like distant galaxies (‘alpha synuclein‘).
The diagnosed individual has to adapt their lives to this new reality in order to get by. They are analogous to a refugee (bad analogy I appreciate, but bare with me – I’m going somewhere with this). Many fantastic support groups are available to help make that adjustment easier. But what happens when that individual wants to get involved with the research being conducted on the condition?
Efforts are being made in this direction, but we can always do better.
In today’s post I would like to discuss/explore an idea that deals with involving the Parkinson’s community in the research side of things, and has the goal of making the research more ‘patient-centric’.
When a refugee moves to a new country, it is an overwhelming experience.
Can you imagine leaving the mountain village that you have lived in your whole life – everything that is normal for you – and moving to some strange, big western city. Being exposed to a new culture, new societal expectations, new eco system, new prejudices, new everything. It must be a shock to the entire system.
If you speak the local language, great. You should be able to make do and get by with a bit of effort. But in order to truly integrate into the new community, you will still need a lot of support.
I was recently talking with a man who was a refugee and he had moved to Canada five years ago.
Canada. Source: Kuoni
He was originally from central Asia, and he talked at length about the hardships of the whole process. Even though his new home in North America was vastly more comfortable than his previous situation, he had still found the whole process extremely tiring and disorientating.
What stuck with me from that conversation, however, was that he could not say enough good things about the Canadian system of integration. He was extremely grateful for everything that they had done for him to help him insert himself into Canadian society. He was particularly impressed with the ‘Groups of Five‘ programme.
A “Groups of Five” programme in which five or more Canadian citizens (or permanent residents) can arrange to sponsor a refugee living abroad to come to Canada. The principal applicant must already have refugee status, and the role of the sponsors is to support that refugee by:
- providing the cost of food, rent and household utilities and other day-to-day living expenses;
- providing clothing, furniture and other household goods;
- locating interpreters;
- selecting a family physician and dentist;
- assisting with applying for provincial health-care coverage;
- enrolling children in school and adults in language training;
- introducing newcomers to people with similar personal interests;
- providing orientation with regard to banking services, transportation, etc.; and
- helping in the search for employment.
Basically, it is a process of making integration into a new society easier and less troublesome. If there is a problem, the refugee can go to one of the five sponsors and they can help the refugee to solve the issue.
Perhaps other countries have similar systems (I don’t know), and perhaps this system has its faults and doesn’t always work out (I don’t know). But what I do know is that such a supportive system could be applied to different aspects of our lives. In particular, I was thinking of Parkinson’s and how the research community could help to integrate members of the Parkinson’s community into the research. Not just as guinea pigs, but also get them involved in the development of the research question being asked, the designing of the research project, the running of the study and the dissemination of the results of the study – all of which would hopefully make the research more patient-focused.
While groups like Parkinson’s UK, the Cure Parkinson’s Trust and the Michael J Fox Foundation do a great job of supporting new diagnosed individuals as the transition into their new reality, for those who are interested in understanding the research being conducted on the condition, life can be a lot harder. And given the amount of email I deal with via this website on this topic, I feel I can speak with a little bit of authority on this particular matter.
Parkinson’s UK is certainly pioneering new approaches to achieve better involvement in the research planning from the Parkinson’s community, particularly with their Research Support Network programme and their Patient and Public Involvement (PPI) initiative:
And these efforts are yielding fantastic results (think: Joy Milne, the woman who can smell Parkinson’s), plus they provide a very useful guidebooks with lots of ideas about how the community can be more involved.
Great stuff, right?
But on the research-side of this partnership, it feels like a lot of ‘box ticking’ is being done in order for research groups to be able to say that ‘patients were consulted’ on the grant funding applications for example (there are researchers who will not appreciate me writing that, but I dare them to say it’s not true). And if we are honest, in some cases the enthusiasm from the Parkinson’s community about being involved in the research is being met by a lot of polite smiles from the research world.
And please don’t misunderstand me here: I don’t think that there is anything negative or dark intended by the ‘polite smiles’. Rather I suspect that the researcher community is not really sure what it is doing when it comes to integrating the Parkinson’s affected community. They are feeling their way along with regards to this brave new world.
So the question then comes back to: how can we better integrate these ‘refugees’ into the world of Parkinson’s research?
Now, a lot of research scientists (particularly the group leaders) will be breaking out in a sweat reading all of this because we are already overwhelmed with all of the other ‘boxes’ we need to tick in academic research (teaching, exam marking, department administration, applying for grants,… not to mention actually doing the research). It’s completely crazy to discuss adding more to the workload.
But we’re really good at ‘completely crazy’ here at the SoPD, so let’s go for it:
And again, this is just me thinking out loud – but I think that the ‘Groups of five’ concept could be applied here.
Why not provide an individual with Parkinson’s access to five researchers who they can contact if they wish with regards to particular questions. And the opposite applies as well (providing each PD researcher with access to five individuals with Parkinson’s). It could be as simple as an email question being emailed to a group of researchers, and whoever has time to respond actually responds. While group leaders may be too busy for this kind of arrangement, it could be extremely beneficial to young PhD students who are seeking to learn/understand more about the condition they are studying. And in the modern world, this arrangement does not need to be based on geographical location (a lab in Australia could have ‘refugees’ in other parts of the world).
This arrangement would not be for everyone, and some rules would need to be applied, but I firmly believe that a great deal of value could be had from more of the Parkinson’s community being involved in the Parkinson’s research. We just need to find better ways of integrating folks.
Like I said, something for someone to chew on. Feel free to ignore, or (even better) harshly critique in the comments below.
Any and all thoughts are welcomed and appreciated.
The banner for today’s post was sourced from Bankingtech