Parkinson's Research

Patient-centred Research – uMotif

The Charco Neurotech team are developing the CUE1 device with, and for, people with Parkinson’s. We are therefore grateful to have spoken with another medical technology company founder, Bruce Hellman, co-founder and CEO of uMotif,to hear what inspired him

to develop a patient-centred app and share his advice for other medical technology companies.

The Data Capture Platform Patients Love to Use

Founded in 2012, uMotif started as a search for a simple way to help people capture data about their health. Bruce and his co-founder, Ben James, met with two people with Parkinson’s who were excited about their idea; the business then developed with their help, as well as the support of the Cure Parkinson’s Trust. As Bruce says, “The founding stimulus was working with those two patients”.

However, Bruce light-heartedly informs us that, “whatever your first idea is in a business it’s almost certainly not exactly what you end up doing”. The challenge for Bruce and Ben was to find where they could deliver value, in a way that was sustainable. Through a “meandering path” they realised they could drive real value by helping patients to capture data for researchers; value “which is defined as a must-have, not a nice-to-have”.

Today, uMotif captures the data of participants in clinical trial research, using a platform designed with patients to ensure its ease of use. Bruce envisages a future where trials are designed around the participants themselves, giving them a better experience and knowledge of their own health while also helping to generate new insights that are key to bringing new drugs to the market faster.

The Digitalisation of Healthcare and Research

Virtual studies, where patients don’t need to attend clinics, help to answer questions that haven’t been possible until now. For example, uMotif’s app was recently used for the UK’s largest virtual research study, investigating if weather influences pain. Participants tracked their symptoms while their smartphone used GPS signals to collect the weather conditions.

Tracking symptoms and data directly from a participant’s smartphone also reduces the burden on patients, making it a more beneficial experience for them. The uMotif SaaS platform has been entirely designed throughout its development with patients in mind, from the initial design stages with the Cure Parkinson’s Trust to the randomised controlled trial to assess its benefit in seven NHS centres, taking on board patient and clinician input.

In February 2016, uMotif powered the “100 for Parkinson’s” initiative. The app was made directly available to the public, who were asked to download it and track their data for 100 days, and to donate this data to research. Over 4,200 people took part, collecting over 2.2 million data points. Bruce tells us that “the great thing was that the participants all enjoyed taking part, donating their data but also learning a bit about themselves too”.

As a software which can be downloaded onto one’s smartphone, the uMotif app makes it easy to track data from the comfort of one’s home. There is a shift in how clinical trials are being run; “more and more it’s happening digitally, as people prefer to do things remotely rather than go to a hospital”. The current pandemic has accelerated the digitalisation of research, but also of healthcare, as more consultations are occurring virtually. You can read our previous blog posts about COVID-19 and Parkinson’s, to hear from practitioners making use of technology at this time, here and here.

Advice for Others Developing Medical Technologies

The biggest challenge in this area, Bruce believes, is creating something that people will ultimately buy and use. You need to find something that sticks, and that people rely on, “so that if you took it away they’d say, ‘no, we need that!’”. He advises focusing on the real essential value that you are going to deliver, that has a tangible benefit; “What is it that people can’t live without?”.

A difficulty that Bruce says he personally faced with uMotif was trying to ignore so much of the opportunity he saw in other areas and finding the one thing that he could focus on. “It’s about trying not to do too many things”. He tells us that sometimes it may be right to pivot to a different area and follow a different path but, “you’ve got to be all in”.

Bruce warns that you will have to try things before you know exactly what to do, and he advises that when learning from your audience and the patients you aim to help it’s far better to speak with only eight people in depth rather than simply chat with 50 people.

A Global Future

The aim for uMotif is to be a world-leading platform for capturing research data. Bruce hopes the business can “grow smoothly and sustainably to deliver more value to patients and researchers”. He acknowledges that they already know they can deliver real value to people and make the experience of participating in clinical trials better for them. “In growing our business, we can have more of that positive impact on patients and researchers and the more positive impact we have, the bigger a business we can grow. So, the two things go together quite nicely”.

Bruce says that he is excited about better and more modern technology in the future, and he is particularly excited to become a global business with a broad footprint, reaching more patients and researchers across the world.

We are also excited to see uMotif’s growth and for the time “when people think of capturing data for research, [they] think of uMotif”. We are grateful to have spoken with a business founder so dedicated to providing value for patients, as we similarly believe that the most important thing for medical technology companies is to continually speak with the people they aim to help, researchers, and healthcare providers, to make sure we bring value to all parties.

Thank you to Bruce, co-founder of uMotif, for sharing his valuable advice with Charco Neurotech, an early-stage medical technology start-up aiming to bring value to the lives of people with Parkinson’s.





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