Patients, like holidaymakers, should be at the centre of their journey

Following article was first publish on Hotwire:…

Do you remember how difficult it used to be to go on holiday? How you had to go to a travel agent; choose your holiday from a paper brochure; remember to take your printed airline tickets, and then have no idea whether your plane was on time until you arrived at the airport? It felt as if all the onus was on you to navigate a complex process, even though the tourism industry depends on people enjoying their travels. Fast forward to now, and we the traveller are firmly in charge. That’s because digital technology enables us to create our individual journeys in ways that are designed for us and delivered smoothly, efficiently, and speedily.

These new digital services are more inclusive for people of all ages, abilities and interests. Making things simpler for elderly people, those with disabilities, or those wanting to book the type of holiday a high street agent may not cater for. In other words – holidays are now centred around holidaymakers, not around the industry providing the tourism services. Now a much more critical area is being impacted by this same switch in focus, and the potential rewards are highly significant.

I believe we are in the midst of a major shift in healthcare, one where clinical researchers think first about the patient who is taking part in their trial. This move is commonly referred to as ‘patient-centricity’. As with many trends and buzz-words, there is a degree of hype, but at the core is a fundamental improvement in the way things are done. Patient centricity gets to the core of what clinical research and healthcare should be doing – focusing on how the patient’s experience and journey can be maximised. Whether the patient is receiving care in their hospital, or taking part in a trial of a ground-breaking new therapy.

When I co-founded uMotif in 2012, we started by working with patients with Parkinson’s Disease. Since then, we’ve continued to work and design for patients first, aiming to provide people with a digital experience that helps them to track their symptoms, outcomes, experience and other data including from wearable devices. By providing patients with a great experience that’s useful and compelling to them; clinical researchers receive more data from patients, who are also more likely to stick with the study for longer. Patients also feel more engaged, motivated and can have a better clinical result.

In our “Cloudy with a Chance of Pain” study, we captured over 5.1 million symptom data points for Professor Will Dixon’s team at Manchester University. As Will puts it, this “has allowed us to answer questions that have been elusive for centuries through the power of patients’ own technology”.

While helping Will capture more data, we’re also helping the people taking part:

“I have found using the uMotif app really valuable. It gives me a chance, each evening, to quickly review the day and monitor symptoms. Having this overview generally means I feel more optimistic about my disease as the easily remembered bad days are out weighed by good days when I look back at the graphs.”

Cloudy With A Chance of Pain Participant

In a current study using the uMotif platform, patients are tracking so much sleep and symptom data that the study team will compete the study sooner, requiring fewer patients to take part. This means their research is faster and lower cost – speeding up the path to new insight to benefit patients. The only way that this can be achieved is by giving patients something they enjoy using, which delights and engages them, and makes them feel like a more active participant:

“Completing the info on the motif is part of life, and no effort at all. It certainly makes me think about what has happened in the day and how I felt.”

uMotif Study Participant

We’re incredibly excited to be working with AstraZeneca, Merck, QuintilesIMS and other forward-looking researchers, who share our belief that the future will be for those who fundamentally design for the needs of patients first. This patient-first approach is going even further – with new movements and forms of research initiated by patients themselves. Often where patients are frustrated with the slow and bureaucratic status quo.

One such patient is Jessica Morris from New York, who in 2016 was diagnosed with glioblastoma multiforme (GBM), an aggressive form of brain cancer. Spearheaded by Jessica, we’re helping to launch a new patient-focused movement – OurBrainBank – one where we use our digital tools to transform glioblastoma from being considered terminal to treatable. Our aim is achievable because our digital tools are really virtual limbs for patients, enabling them to manage their symptoms and treatments, and enabling medical experts to analyse the data that our digital tools collect.

If you’re interested do check out what we’re doing. This is like booking an around-the-world ticket, with your tickets on your phone, and you being in charge of where you go, how fast and who with. That’s just the sort of journey I want to be on.