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uMotif worked with IDEO to shape a patient-centric approach by focusing on human-centered design.
The concept of patient centricity has been discussed at length by drug developers, service providers, and patient groups for some time. There is recognition that patient recruitment and retention in clinical research is a critical issue and that conducting research with the perspective of the patient incorporated is of benefit to all stakeholders in the industry.
But too often patient-centric approaches turn into gimmicks tacked on to a study that has already been designed: time and again, sponsors will think first about the clinical endpoints they want to collect, then the methodology they want to use, and speak to people living with the condition they’re considering as an afterthought-another box to tick.
In our opinion, this isn’t patient centricity-it’s an attempt to carry on with business-as-usual.
At uMotif, a software company focused on patient data capture for Real World Evidence (RWE) and late-phase clinical research, we worked with IDEO, a global design agency, through its ‘start-up in residence program’ to shape our patient-centric approach by focusing on human-centered design.
IDEO’s concept of human-centered design is considering that any product or service needs to be desirable, feasible, and viable – so any new offer will eventually need to satisfy those three features. With human-centered design, we focus on desirability first: is this something people want? There is no point at all having something that’s feasible and viable if it’s not something that actually fills a need for people.
A classic example of a business which took that approach is Airbnb. Despite it now being a darling of Silicon Valley, it initially struggled to get funding. Though people with spare rooms wanted extra cash, and people looking for an alternative to hotels, it initially looked difficult to pull off and hard to monetize. But the approach worked: people liked the concept so much that the other hurdles were overcome.
That approach might seem obvious, but it’s one we often miss in the healthcare sector. To use one example from IDEO’s experience, it’s in everyone’s interest to stop the overuse of antibiotics, which are often handed out far too frequently at pharmacies-but previous efforts to curtail the practice have almost universally failed.
Thinking about human-centered design can help us understand why: one previous approach was to put posters in pharmacies reminding the professionals not to over-prescribe-but this ignored the pharmacist’s own incentives. If customers think they need antibiotics and insist on them, and are refused, the customer will go to a rival. A poster won’t change that. By not thinking about the pharmacist’s needs, that particular solution was doomed at its inception. In contrast, the ongoing IDEO project is testing a number of different approaches, including driving patient awareness of the pros and cons of antibiotics, incentivizing better behavior among prescribers through new prescription tools, and prototyping new educational platforms.
Similar tensions can exist in medical research: while patients might be the people intended to ultimately benefit from research–the immediate customer is the research sponsor. When focusing on the data they want, research sponsors might focus on the metrics that are easiest to quantify-for example, tracking levels of a hormone, or blood pressure, which a patient might not care about, rather than reported pain or mobility, which they do. Similarly, to get the best data, research team may ask for frequent trips to hospital or a painful procedure-information that could increase the likelihood of a patient dropping out of a trial. Involving patients early in the design of research can avoid those hurdles.
The team at IDEO demonstrated that by having long and detailed conversations with small numbers of people who had used the uMotif app to take part in clinical research studies, a deeper understanding of what patients want from clinical research tools would be gained.
We learned that patients genuinely benefit from tracking their symptoms, even as an element of a clinical research study, further building on the research of Ethan Basch, which showed that symptom tracking improves survivorship and Quality of Life .
We also learned some of our assumptions were wrong: people often didn’t want to track the same things, and more information wasn’t always better for the patient. By simplifying what data was collected as part of the clinical trial, and enabling patients to choose additional data they wanted to track separately for their own benefit, the experience for the patient improved.
At the same time, getting accurate and timely data-and enough engaged participants in studies who wouldn’t drop out-is a key need across medical research Studies show that 90% of patients would like to participate in medical research, but only around 3% of patients ever do-so there is a willingness for more people to help in the process-and ease of participation is one factor to potentially increase participation.
By focusing on the needs of the patient, and allowing them to use their own device, data collection is made easy and straightforward, and gives patients a say in what measures they track: a study may only want three or four pieces of information (for example, self-reported pain or mobility), but study participants can pick extra information to track for their own interests.
We have found this approach works for everyone. In the ‘Cloudy with a Chance of Pain’ study that used the uMotif app for data collection, a real world cohort study with 7,972 participants examining the association between weather and pain  one participant submitted their data for more than 460 days, never missing one, continuing long after the research project ended, simply because they found logging their data helpful to them.
At the same time, researchers are finding that taking a patient centric approach increases the volume of data collected-potentially shortening trial times and reducing the burden on the participant.
1. Basch et al, Overall survival results of a randomized trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. ASCO 2017. https://meetinglibrary.asco.org/record/147027/abstract
2. Institute of Medicine (US) Forum on Drug Discovery, Development, and Translation. Transforming Clinical Research in the United States: Challenges and Opportunities: Workshop Summary. Washington (DC): National Academies Press (US); 2010. 6, Clinical Trials in Cancer. Available from: https://www.ncbi.nlm.nih.gov/books/NBK50895/
3. National Institute for Clinical Research Network (NIHR CRN) Survey 2014. https://www.nihr.ac.uk/news/nine-out-of-ten-people-would-take-part-in-clinical-research/2377
4. Druce KL, McBeth J, van der Veer SN, Selby DA, Vidgen B, Georgatzis K, Hellman B, Lakshminarayana R, Chowdhury A, Schultz DM, Sanders C, Sergeant JC, Dixon WG
Recruitment and Ongoing Engagement in a UK Smartphone Study Examining the Association Between Weather and Pain: Cohort Study. JMIR Mhealth Uhealth 2017;5(11):e168
Bruce Hellman, CEO, uMotif
Betsy Fields Smith, Portfolio Director, IDEO