Epiphany in Glasgow

It's not everyone who is blessed with a moment when their existing philosophy is transmogrified, but Walter Maetzler, then of the University of Tubingen, remembers very clearly a moment ten years ago when his philosophy on research changed instantly. A young neurologist, with an interest in Parkinson's, Walter was at a conference on Parkinson's, listening to a patient advocate describing the symptomatology of Parkinson's from a PwP perspective. Nothing unusual there but Walter was struck by the way in which the advocate seemed to find a language that was understandable to both patients and scientist clinicians, the perennial problem for anyone addressing a mixed audience.

As he listened, he realised that the speaker not only understood his own Parkinson's, but that he was describing an entirely different repertoire of experience from those Walter was familiar with. It was a revelation. As Walter later put it "My Parkinson's framework was based on clinical observations and I understood immediately that this was not the true Parkinson's".

That moment was 9:15 AM on Thursday, 30 September in the plenary session on "Parkinson's disease: how does it unravel?". The speaker was Tom Isaacs and the conference was the second World Parkinson Congress in Glasgow. A seed was sown.

Experiencing a realisation and translating it into meaningful action are two distinct things. For weeks after the Glasgow meeting, Walter deliberated on how to translate the subjectivity of patient experience into the kind of objectivity needed for scientific analysis. How could one reconcile the two? Above all it had to be a solution that was meaningful to clinicians, scientists and patients alike.

Conversations with Holm Graessner, a colleague at the University of Tübingen, persuaded Walter that the future lay in sensors. In 2020, sensors are, if not commonplace, certainly widely used. But in 2010, this was a leap of faith. Many would not have known where to begin, but Walter's experience in Glasgow had shown him where the story had to start – with patients. It was all about translating the patient experience into ways that benefit the patients in their everyday lives, but also facilitate doctor-patient interaction. Sensors provided that longitudinal information that is absent in standard patient physician consultations, which are little more than snapshots.

Remembering the occasion recently, Walter recalled feeling nervous about emailing Tom. Tom was the most widely known and influential PwP in Europe and Walter firmly expected his email to go straight to Tom's spam folder. But it did not. Tom was excited about the project and it soon became clear to Walter that he would collaborate in a multicentre European project to look at sensor data in people with Parkinson's.

Months of to-and-fro, paperwork backwards and forwards, saw the project evolve from the germ of an idea to a fundable multicentre work programme application. The project was christened Sense-Park and it was approved for three years of funding in 2011.

Three years is not a huge amount of time in research terms (believe me, I've been there!). But rather than starting immediately on sensors, Walter and Holm turned to the patients. As Holm put it, "We went to the patients and asked them what are your needs?" Over several months they interviewed over 200 patients, asking them what they thought should be measured. Many focus groups resulted and by the end of this first phase of evaluation, tempered by the practicality of the instrument designers, the brief for each of the sensors had emerged. Sara Riggare, involved in the focus groups, remembers that "people with Parkinson's were an essential part of the decision-making process throughout".

In many ways Sense-Park was original and highly innovative. Everything was patient driven and data ownership rested with the patients. The use of technology, whilst commonplace now was novel in 2010. Although the Sense-Park team would hesitate to call the project revolutionary, it has nonetheless influenced our thinking and was certainly at the forefront of technology at the time. This has led on to other projects as well. But perhaps it's greatest legacy was the way in which it encouraged interactions at all levels. Alan Lewin, a patient advocate, spoke of "the enthusiasm and dedication of all members of the team and especially the technical and clinical experts". For Sara, the "biggest gain was the people I met and the wonderful discussions that came out of having representatives of all perspectives in the same room".

In the end, it all comes down to communication. In this case fifteen minutes of communication in Glasgow in autumn 2010. That's all the time it takes to sow a seed.