Having submitted our abstract, we were invited to present a poster …
The World Parkinson Congress (WPC) gathering in Kyoto was impressive.
Not only in terms of numbers of attendees, range of topics or organisational ambition in the way it uniquely invites patients to be equal partners in the deliberations and the level of sophistication of those discussions, but specifically, seeing the depth of talent and commitment of the attendees.
As such, this gathering provided an unparalleled opportunity to validate our thinking and make sure it is grounded in realities of needs of patients and carers, researchers and physicians alike.
We presented this poster …
We sought validation and validation we got, from a long list of experts who engaged in depth on what we are proposing as a way of creating a device-agnostic patient-centric and voice-activated framework for collecting structured and unstructured data and making that data available, securely and selectively to the treating physicians, researchers and the PD community as a basis for deriving Actionable Insights.
We got that validation from discussions with …
- Michael J Fox Foundation – MJF
- The Cure Parkinsons Trust – CPT
- Davis Phinney Foundation – DFF
- Parkinson Disease and Movement Disorder Society – PMD
- University of Lisbon
- University Hospital Schleswig Holstein
- Radboud University, Nijmegen, Netherlands
Patients and Advocates
- Bill Patterson
- Alison Williams
- Kevin Krejci
- Karen Jaffe
- Jens Greve
- Tokyo TV
Bernadette Siddiqi from MJF offered to connect us with Fox Insight which focuses on collecting data needed for drug trials, an area of focus.
Helen Matthews, deputy CEO of CPT connected us with John Dean, who runs www.triadhealthai.com , a startup which focuses on using Alexa and Google Home for voice therapy – an area that features as an Actionable Insight in our PLM demo.
I finally caught up with Maria Barretto, the CEO for India of the PD and Movement Disorder Society and we met Dr Sharmila Donde the Director for Community Development and Training. Her poster was opposite ours and made me realise just how dire the situation is in countries like India, where a ‘PD camp’ or annual visit by a neurologist to a series of villages, where volunteers have identified potential patients, is potentially the only time a patient may see a neurologist… We discussed how equipping volunteers and subsequently patients with a camera phone may make remote data collection to support preparation for camps and follow-up of patients feasible.
Steve Hovey, a patient and DFF Ambassador, who had been assigned to me as a ‘buddy’ by WPC, introduced us to Polly Dawkins Executive Director of DFF, an organisation set up by the Olympic cyclist Davis Phinney. Steve referenced Dr Jay Alberts in the US, who has collected a lot of cycling-related data.
Steve’s wife Nancy and my wife Shabnam exchanged notes on being carers … There was a lot of emphasis on exercise at this WPC gathering and the needs of carers were kept in focus. Ou PLM framework places the carer firmly in the inner circle together with the patient and doctor.
Joaquim Ferreira, Professor of Neurology at Lisbon University, who presented a session on pain, visited our poster and reviewed that part of the demo which deals with symptoms in general and pain in particular. It turns out that pain in PD is a much neglected area with too few studies. Personally, I was pleased and surprised to see ‘frozen shoulder’ finally recognised …
Walter Maetzler, deputy Director neurology, University Hospital Schleswig Holstein, in Kiel, who also presented a session on wearable devices, visited our poster and emphasised the importance of aligning our scale with an existing standard. He is the co-chair of the Technology task force of the PMD Society and leads research into mobile sensor technology, including the home-based variety, and asked to be kept informed of progress.
We concurred but emphasised the need to empower patients by also recognising the patient’s view on symptoms to be tracked.
We listened to Professor Bas Bloem from the Netherlands, where he has launched ParkinsonNet, a multidisciplinary approach to PD treatment. He is undoubtedly one of the most impressive, thought provoking and controversial spokespersons on Parkinson’s, His talk about using real-world data as an alternative to clinical trials was, in my view, closely aligned with PLM.
Afterwards,we got a chance to join him in a ‘nitty-gritty’ round table discussion and finally were invited to present our poster to him in private.
He is currently involved in a Google Watch trial.
He commented in his talk about the ‘tap test’ being a key part of the UPDRS – the universal PD rating scale – which is difficult even for experts to assess accurately and yet used by most neurologists and important in clinical trials. This made me comment on the possibility of using AI instead for more accurate – and frequent – assessments. He confirmed that work is already in progress on this …
That aligns neatly with our capturing of video data of precisely this ‘tap test’.
Sense4Care Angel4 Fall Detection www.sense4care.com is a commercial version of the device built by a member of our team, a picture of which is included in our deck to underline the need for an ‘open API’ framework to ensure any device can participate in collecting patient data. It didn’t take him very long to integrate his fall detection pendant which he built for his mom. Professor Bas Bloem referred to a similar Phillips device, which enabled him to carry out an important study of the ‘real-world data’ collected across its users.
I never did get to talk to Sony about the AI enabled camera in the nose of Aibo, their cute robot dog – but I did make contact with professor Luc Steels who worked on the design of the original Aibo and is considered an AI pioneer … He currently is Director of AI at Vrije Universiteit Brussel and so the opportunity to explore this further is still there.
We also met and benefited from discussions with individuals who – like us – were there to simply present a poster.
Alison Williams, a veteran of WPC, had no fewer than three posters to her credit.
She reflected a common concern – ‘I don’t trust Alexa’ … I intend to follow up to see what we need to do to persuade patients that we will keep their data safe !
In fact a key part of our research into feasibility was proving that we could control voice and video capture.
The PLM architecture clearly reflects this focus on data security …
And we have clearly committed ourself to democratising device connectivity by means of open source APIs.
We met a number of patients with a clear technical bbackground.
Bill Patterson, a retired programmer who made me realise – by explaining his effort in tracking his own symptoms while cycling, that cycling biometrics is an interesting source of data to be added to our list of potential sources. Bill had brought with him Tokyo TV who were following him around and recorded large parts of our conversation … They have promised to share the result.
Kevin Krejci, who is a patient and an advocate and works with Fujitsu where he advises startups, showed interest.
Karen Jaffe, a patent and a doctor, founded InMotion www.beinmotion.org and is a very successful fundraiser. She suggested we might want to use a ‘wordbubble’ as an alternative way to show what symptoms matter most to a patient.
One of the first people we met, on the opening day, trying to get his phone to scan our QR code was Jens Greve… His company, www.yuvedo.de offers a PD app and we quickly found common ground on what is needed – as well as gaining new insight in a possible mutual (Genossenschaft) structure with patients as members, as a funding option – a subject close to our heart …
We have invested in a detailed feasibility study and specification with Compsoft, a UK specialist mobile and Alexa developer.
We could not imagine having made the impact we did, without our knowledgeable, talented and generous team …
And we made it official …
KoDe is now incorporated in the UK and Dean is the CEO
Koen and Dean
I will continue to focus on Product.
The full WPC presentation can be downloaded from the previous post – the slides shown in this post are a subset …