What’s in it for you? What motivates PwPs to contribute data

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Koen Van den Brande CSO

There is an emerging consensus that more data about Parkinson’s can and will lead to a better understanding, maybe even a cure, eventually.

Hence, making it possible for PwPs to contribute data more frequently, by means of less formal observations at home complementing periodic professional clinical assessments, would seem a highly worthwhile aim.

The problem is that Parkinson’s is a slow-moving condition, with gradually worsening symptoms.

And so, the question is, what can motivate an individual PwP to contribute that – seemingly endless – stream of observations that never seem to get any better … ?

Maybe the best way to find out would be to ask …

What’s in it for you ?

For myself the answer – in theory – was simple. I set out to design and build a platform for collecting that data – both structured and unstructured – because I firmly believe that it is essential to finding a cure using Ml and AI.

Along the way I signed up for a variety of similar attemps with competent apps such as PatientsLikeMe, ManagemyPain etc and rarely managed to keep motivated for more than a few weeks, despite that strong conviction.

And yet, I did try and keep notes on symptoms, a food diary and a spreadsheet tracking symptoms and DBS settings after my implant. Typically these were about communicating more effectively with my neurologist …

For our venture to collect longitudinal data, to succeed, we need to understand how to answer the question

What is in it for me ?

If I look back at the poster I presented at the WPC in Kyoto in 2019, it was all about comparing myself against others in order to find ‘actionable insights’, which might help me find ways to improve and to pass on this knowledge gained to others …

In the accompanying demo, I used an example about severe pain in my feet every morning, which was – unexpectedly – solved by an experienced PD physiotherapist – leading me to want to find a way to tell others …

Certainly a sense of community and sharing such experiences would seem a strong need … I have been asked on a number of occasions via Positive Attitude – a pan-Indian PD community WhatsApp group and more recently by a PwP who tracked me down via a NeuroPath interview – about my personal experiences getting a DBS implant …

So despite the fact that PD symptoms can be very different, or maybe just because of that, there is a definite need to seek out people with similar experiences and compare notes.

I have met a number of PwPs in the YOPD – Young Onset PD – category, who have tried to help others, by setting up advocacy groups …

Some of the largest of these were driven by well-known individuals from film, sports etc. who used their celebrity status to increase visibility, share experiences and collect financial contributions, to further research.

But there are many smaller groups, driven by the same intention, which could be leveraged with common infrastructure.

Elements of such a common set of technical capabilities could be a white-labelled or co-branded app and the ability to easily set up and run small Parkinson’s communities, with local messaging, meetings, practitioners etc …

Maybe communities could help sustain commitment to collecting data better than individual PwPs can …

Clearly another strong motivation is to help the care team come up with the best possible advice, medication plan or therapy. That suggests that at least leading up to consultations or therapy sessions, PwPs would be highly motivated to generate the necessary data – if the consulting neurologist shows commitment to using the data …

So setting up a forum for discussing with colleagues, how to use data, might also be useful if it is supported by an expert in data visualization …   

And what about the caregivers, especially those supporting the most advanced in age PwPs … ?

Involving them directly in accurately recording medication taken, on/off periods and tracking some of the symptoms and QoL scores, which may be harder to assess by the PwP themselves might help …

The strongest motivator – no doubt – would be to find small ways of improving the quality of life of a PwP …

What would motivate you ?

Please give it some thought and write to me at Koen.VandenBrande@NeuroPath.life
Whether you are a PwP, a caregiver or a professional, we would like to hear from you.

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