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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’. |
Source: Yanghu
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.
Source: Youtube
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
The Science of Parkinson's 
I like the refugee analogy. It captures the depth of the difficulty adjusting to a new reality. I felt a desperate need for something–I wasn’t sure what–from the medical community. And so I dove into clinical trials. It helped. But I’ve also spent a million hours combing the internet and I think the sort of engagement you’re suggesting might have softened my sense of lonely despair, providing a helpful forum where someone was interested in my concerns. In clinical trials we work within the parameters of the study and it’s sad that there’s no time for my input. The level of support provided by Canadians makes them sound like extreme outliers (to someone in the USA). Your thoughtful insights are appreciated.
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Hi Diana,
Glad you liked the post/analogy, and thanks for sharing your thoughts. Much appreciated. I’m not sure if you are aware of it, but there is helpful forum on Facebook called the “Parkinson’s Research Interest Group” (https://www.facebook.com/groups/482344755486600). May be of interest for you.
Kind regards,
Simon
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Simon
I very much appreciate the idea behind this. I feel we have the rudiments of this in the Facebook group Parkinsons Research Interest Group where some of the contrbutors are experts in the field. How can we move forward on the concept?
Keith
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Hi Keith,
I’m pleased you liked the idea. The great let-down here is that I’m not real sure how to move forward with it. I was kind of hoping just to generate some constructive discussion of this and similar ideas. I will wait to see what other think and then try to propose some directions it could take.
Kind regards,
Simon
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Hi Simon, this is an intriguing idea. Thinking about “what’s in it for us” from the perspective of researchers and Parkies, let’s start with the researchers. They get an appreciation of the wider context, an appreciation of the priorities of improving the disease course, input to research studies. This is all fine. My challenge is whether it’s a “must have” or a “nice to have”.
The Parkies gain a wider understanding of what’s going on. This is very interesting for a lot of us and potentially makes a big difference to our lives when we read an objective scientific critique of, for example, food supplements that claim to improve Parkinson’s. My challenge on this one is whether we should be asking researchers to answer wide-ranging questions from Parkies like me who aren’t experts in the disease.
There is also a difference between what you could call clinical research, and fundamental research. The difference between a front line fundamental researcher and a Parky is too great for the 5 researchers: 1 Parky to work. Most of our questions relate to daily living and impending treatments, rather than, for example, whether DJ-1 and LRRK2 interact. Not that we aren’t interested – far from it – but I struggle to see how you would get real value from getting input from Parkies on the direction of your research in this way.
I would prefer researchers to apply their valuable time and great talent with a laser-like focus, making new discoveries, which will benefit us in the longer term. That’s why the 5 Parkies: 1 researcher should be the priority – I’d rather be there as a resource for you rather than the other way round. You should use the access as you see fit.
Finally, what you do on this site is bang on target for what’s needed. You keep us informed, interested and, quite frankly, inspired. There are some other researchers doing similar work, so maybe that’s a better way to go, encouraging a wider discussion and debate on research topics and direction through more open writing.
Kevin
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Kevin,
I like the way you described this as pros and cons for researchers and people with PD, and I agree that I wouldn’t want this sort of interaction to be tiresome for researchers. I think Simon’s suggestion of using Ph.D. student researchers sounds fun. My daughter is in this category (though not medical), and I think she and her friends would enjoy it. I also agree that the kind of questions that people with PD would be writing about could be problematical, and so this experiment should be tried on a small scale first. As a subject in two clinical trials, one finished and one ongoing, I have several things I would love to say to the researchers, though this is “after the fact.,” after being a subject for a while. I’m not sure what I would have said had I been consulted in the planning phases. But I wouldn’t mind being consulted.
I do occasionally have questions relating to molecules, and, Simon, I’m curious if this sort of thing would be appropriate, or if it just indicates that I’m self-absorbed: From 23&Me, I learned I have a mutation in a SNP in DCC, and have read up on this cell’s functions relating to brain neurons. I noticed some researchers in Australia have written about its possible effects on maintaining health of neurons; I think mine is a loss of function mutation, and I would be interested to ask whether there is anything else I could read about this.
Anyway, thanks, Kevin, for your perspective! Enjoying the feedback : ) — Diana
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Sage words as always Kevin.
I think you are right – absolutely on the mark. But I do like the idea of PhD students interacting more with the community. My interactions via this website (and working in the clinic) have changed many of my views regarding PD and the way we try to treat it. I only wish I had had this experience during those formative years.
Many thanks for taking the time,
Simon
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Thanks, Simon and Diana. I agree completely with the point about PhD students. This is the stage of their career where they can gain a better appreciation of the purpose of their research by interacting with people who may benefit directly in the longer term.
Kevin
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Being a Canadian I do enjoy this analogy. I was diagnosed in September 2017. I immediately began to search for my own village in the Parkinson’s community. I soon found an amazing support group called the Parkinson’s experience. There I met a woman that I like to refer to as my Parkinson’s mentor. She has helped me through a very tough beginning of this new life. I also found the Parkinson’s research group which helped me answer a lot of questions and Finally I came across a blog by a guy named Simon who in a very few short blog posts gave me hope and Turned me into a science geek groupie. I have built my own PD refugee community. Thank you Simon for the post and all the others that I appreciate so greatly
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Hi Margaret,
Thanks for your comment – I’m not sure how my wife will feel about me having science geek groupies, but if I don’t mention it to her then perhaps I’ll live to see another day. Sorry to hear of your diagnosis, but well done for taking a proactive approach to the situation – I have a lot of respect for that kind of attitude. Very pleased to hear that you have a supportive community around you, and that you are seeking out answers. Glad you liked the analogue – if not for the hard winters, Canada sounds like a really nice place to live!
Kind regards,
Simon
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A great analogy, prompting ideas outside the box – so let’s try and do ‘completely crazy’ and explore how to usefully integrate more of the Parkinson’s community into research.
To make the research more ‘patient centric’ and effective we need another research project model or at least modification of the one(s) we currently follow.
I suggest that the pathology of Parkinson’s provides the potential for that change of approach.
The risk of developing idiopathic PD increases over time, in other words it predominately and indiscriminately afflicts the elderly around retirement age. This overarching PD cohort includes those with skills honed over many years as, for example, engineers, mathematicians, medical professionals, project managers, even former researchers!
Such persons, a spouse or close relative, are likely to be a member of the research support network [RSN] of one or both national Parkinson’s charities. They are also potential research project resources. This is recognised by Parkinson’s UK who have a Patient and Public Involvement [PPI] policy in place which provides volunteer opportunities for RSN members.
However, the type of contribution comprises feedback on documentation, advising on grant applications, assisting recruitment of study participants. All is very valuable and worthwhile, contributing to an improved quality of outcomes but mainly treating the volunteers as guinea pigs with the grant application endorsed as ‘patient focussed’.
There are potentially greater opportunities for a more integrated PPI-type approach. This could feature members in a functional role, planning or designing the research project, managing studies, working as vital resource providing mentoring of say PhD students and all on a voluntary basis, charge free!
Researchers and grant providers do not currently recognise this potential. If the lead applicant (aka ‘project manager’) requires a specific but not necessarily medically qualified resource, a statistician say, the applicant is highly unlikely to consider the role being fulfilled by a member volunteer.
Consider the cost effectiveness . Without wishing to state the obvious, the amount of grant funded research is finite – Parkinson’s UK budget totals some £5m per annum A rigorous assessment process awards full and part grant funding where often the main component of a grant application is to meet salary costs. If some of the resource funding could be undertaken by a volunteer member at no or minimal cost, it follows that more research could be undertaken.
Some may argue that people are unlikely to volunteer their services for nothing. There is however a robust voluntary sector in the UK, staffed mainly by people willing to dedicate a regular weekly slice of their time and skills to a charitable cause – think Citizen’s Advice where a few paid officers provide a service predominately delivered through trained, experienced part-time volunteers. I believe if the opportunity existed, there would be no shortage of volunteers from the Parkinson’s community.
It would be unreasonable for researchers to seek out volunteers suitable for their projects, but what if the Charity were to establish and maintain a ‘skills register’ facility of ‘refugees’ for researchers’ reference?
I’m not suggesting this approach would fit all but it could provide a worthwhile means to integrate the Parkinson’s community and deliver more improved outcomes.
Roger E
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Simon,
Your idea of bringing together PwP and PhD students must be a good one.
But, I think your refugee in Canada metaphor is misleading. It implies a great deal of difference between researchers and PwP who are interested in research. I think a better analogy would be someone moving from Cambridge to Oxford. About the biggest problems that they would be faced with is the need to remember the differences in sub-fusc between the two universities and to pole from the sloping end, not the flat end of a punt.
PwP come from diverse backgrounds including: doctors, engineers, physicists, mathematicians, chemists, computer scientists etc.. They don’t lose their skills at the moment of diagnosis. Moreover, the slowly progressing (but, unfortunately, not slowly progressing enough) nature of the disease gives us time to get up to speed. We are able to do research. We should do research. We need to get ourselves organized.
John
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Hi Simon,
I think you would agree with me when I say that you are a rare creature in the Parky world – a person who actually is a PD researcher in your ‘day job’ but also puts out your amazing blog which looks at anything and everything else in an ever-expanding field. There are many more lines of inquiry now into what is generally accepted as a syndrome with infinite variations. I have woken up to the realization that a multi-layered problem needs multiple resources throwing at it but the question then becomes ‘who could tackle this?’ Researchers are so busy they do not have time to really study in depth research by others and so may miss data that may plug the gaps in their own projects. That leaves lay people with an interest in PD (family members, carers, the afflicted themselves) to come up with an answer when we don’t possess enough knowledge to make accurate informed decisions as to what to do with the data that does come our way.
Simon, this is the first time I have written this down – I trust you will be able to be brutally honest if you think my idea is unworkable or is good but requires major tweaking.
Problem: Lots of PD researchers around, many too busy to keep up with new data that appears virtually daily, some of which may be duplication of other researchers work.
Solution: Link these researchers and create collaborations that do not duplicate work needlessly but instead combines the brain power and resources available thereby advancing research results without unnecessary expenditure or time wasting (where a researcher performs a study or trial that is already being worked on or has completed and been buried due to unsatisfactory outcomes).
Problem: How do we find enough scientists with time and willingness to keep looking at PD stuff on the internet that could make a judgement about whether or not a project may bear similarity to a researcher already ‘on the books’ so to speak?
Solution: I am based in the East Midlands region of the UK. First, put out on the internet an invitation to any and all people working on PD research to join a new database. This database will respect Data Protection rules – researchers details will not be made public.
Problem: Keeping confidentiality raises the question who will decide which study could link with other studies – we have admitted we are not experts.
Solution: The researchers will be asked to come up with categories that pigeon-hole research in a very general way – example box 1 could be hippocampus/dark matter, box 2 alpha-synuclein, box 3 familial PD, box 4 cerebellum/medulla etc. (these are just suggestions, I would leave it to the researchers to come up with categories) then we would circulate these around all researchers and hope to reach agreement on category names/contents. The researchers would provide a basic description for each category box including several keywords common to that group (tags). This should be enough for our lay members to look at a new study or abstract and identify which box it should be placed in. Then, we ask permission of the researchers already in that box if their contact details can be passed to the new entry (and/or vice-versa) and they can communicate without lay people being involved. In effect we are a dating service for researchers. I know this goes on now but this would be a structured set up that would make it more dependable – we need to add everyone we can.
And the lay ‘categorizers’ would be responsible for keeping the names/projects links up to date so the researchers can concentrate on research and nothing else.
Simon, what do you think? It would be a sizeable job but I would welcome your thoughts as you are probably the most thoroughly informed person in the PD world.
Okay, 17 March today – let’s see if anyone is interested out there. If anyone replies to this and wants to contact me please give them my e-mail address – thanks!
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Hi Lionel,
Happy to be brutally honest regarding your suggestions:
1. Duplication of research: Researchers (myself included) are an odd bunch. We each think our ideas are unique (they are not) and the answer to everything (dito), and we hold on to them tightly for fear that someone else will steal them from us (sounds rather self absorb, right?). It is idiotic, but probably caused by the competitive funding and publication environment that we exist in. All of that said, there is already a lot of collaborative work ongoing and the research funders have been shifting towards large consortiums (like the human brain project – https://www.humanbrainproject.eu/en/) where everyone is aware of what each other is doing. There are also efforts being made by folks in the Parkinson’s affected community to map out the research and look for possible overlaps – I think this is an awe inspiring idea due to its magnitude, but equally fascinating given that folks in the community could potentially reach out and tap researchers on the shoulder and point out possible collaborations/ideas. I am happy to put you into contact with those individuals.
2. Keeping scientists up to date: I’ve actually been thinking about this one as well recently. There are about 20 research publications per day being published with the keyword “Parkinson’s”. In several years it will be 30-40 per day. No one can keep up with this. It’s bonkers. I am not sure what the solution is, but perhaps it could be in the form of a weekly readout from the mapping effort mentioned in 1. above.
3. Pigeon holes: The pigeon hole approach will be difficult to manage as there are so many pigeons (and everyone has their own pet pigeon!). Plus I worry about the sustainability of these projects over time. You may be familiar with the Wikiversity site set up some time ago (https://en.wikiversity.org/wiki/Portal:The_Science_Behind_Parkinson%27s), it was rocketing along for a while, but sustaining it proved difficult I understand. I can put you into contact with these folks as well if you are not familiar with them.
4. Confidentiality: I don’t think think this would be a problem for the research community.
It is certainly (as you say) a sizeable task!
I hope all is well.
Kind regards,
Simon
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