What does it mean to be ‘PwP-centric’ ?

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Koen Van den Brande CSO

In a – by now quite famous – TEDtalk clip on youtube, Professor Bas Bloem, a Neurologist and outspoken and long-standing advocate of a more patient-centric approach to PD, likens the traditional approach to that of the neurologist as God and the patient as supplicant … It is a funny clip, worth watching.

Instead, professor Bloem suggests an approach more like a collaborative partnership. For me personally, that clip certainly struck a chord. In all matters medical, I have always wanted to take ownership of the decisions and asked my doctor to inform and advise, maybe even guide – but certainly not decide for me …

So, I see the care team – as put into practice in Parkinson.Net, an initiative of Professor Bloem- as a set of advisors helping the ‘Person with Parkinsons’ (PwP) as we prefer to be known – optimize Quality of Life as perceived by the individual.

For me that meant that I did not start taking medication, until about a year after my diagnosis and again stopped medication for a similar period of time after my DBS implant.

For Dirk and Marleen, two PwPs who assist with beta testing of the Navigator app, it is about being able to set up a medication schedule which can be adapted to workdays and days off or the inclusion of non-PD medication.

For Ray, the first user of the NeuroPath Watch wearable, the timing of medication needs to be fine-tuned very accurately, to minimise dyskinesia side-effects …  

Whereas it was relatively easy for me to control whether to take medicine or not, it was not always that easy to assert control over the DBS settings that replaced the medication … It took me a while to persuade my neurologists that we should discuss revising settings and the intended outcome, before actually making the changes … Eventually I acquired the ‘right’ to make my own settings changes …

Similarly, I struggled to get recognition that my frozen shoulder and other pain symptoms were PD-related. Many neurologists until quite recently did not see pain as a PD symptom. It was only when I saw a slide in a talk at the WPC in Kyoto, which acknowledged the mysterious frozen shoulder, as a possible early symptom of PD that I got any form of confirmation.

Later on, it was a relief to find the Kings College London PD Pain questionnaire introduced by Professor Ray Chaudhury and others, which recognises the need to be very precise when describing pain symptoms.

It was also in Kyoto that I got confirmation that the conflict between PD medication and statins, can cause pain, allowing me at last to make a conscious decision to stop taking statins …

In the NeuroPath Navigator app, we have tried to be PwP-centric by supporting different types of questionaires and acknowledging that a PwP may decide not to take a specific medication, even if it has been prescribed … As long as this is transparent and recorded.

I would like to see this type of control extended – as I set out in my presentation in Kyoto – to the PwP being able to add symptoms to the standard PD symptoms list … and let the PwP decide which ones to focus on …

A slide on PwP control over prioritisation of symptoms …

As a recent campaign shows a growing awareness of the wide range of symptoms experienced by PwPs.

Another important aspect of being ‘PwP-centric’ is recognising the different goals of individuals and the different things that motivate us to contribute our data … and the ability to secure our data and control precisely who can access it and for what purposes.

Of course, we generally tend to do what we are asked, whether that means to fill in a questionnaire prior to consultations, or to do the UPDRS exercises to get a score, or even to give some voice samples for research purposes, but PD is a long journey and accurate longitudinal data is needed at regular intervals over years …

At my most recent consultation, I was able to compose a consultation briefing with the following information

  • Topics to be discussed with care team, captured as a Note
  • QoL survey averages of the recent month summarised by symptom topic in a spider graph
  • Evolution of those QoL symptom scores over time
  • Medication currently prescribed and details of intake
  • Notes summarized with a spreadsheet extract, selecting on reported On/Off state
  • DBS settings and history captured in a spreadsheet
  • Cholesterol levels history graphed in a spreadsheet

So what else can we do in the Navigator app, to make it more ‘PwP-centric’ ?

Here are some of my personal suggestions …

  • Recognise my goals and show progress towards them
  • Let me decide the timing of my next consultation and include telemedicine options
  • Allow me to do more of my therapy (e,g, physio, voice) from home
  • Enable me to combine my own preferred apps for subjects like pain or cognitive games
  • Help me to summarise and prepare my notes prior to each consultation
  • Let me keep my history of DBS settings and notes for a more comprehensive picture
  • Help me keep my history of related biometrics (e.g cholesterol)

Maybe you have some other ideas … ?

Please get in touch Koen.VandenBrande@NeuroPath.life

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