As Healthcare Embraces Digital Solutions, Building Trust With Patients Is Key

As healthcare companies, tech firms, and startups seek to use digital tools to help individuals manage their health, patients have growing concerns about how their data are used. During a panel discussion during the opening day of the FT Global Pharmaceutical and Biotechnology Conference 2019, held this week in London, United Kingdom, executives from across the pharmaceutical and digital health spaces discussed the critical importance of building relationships with patients as a means to not only reap high-quality data, but also improve patients’ outcomes and save healthcare systems money.

Kicking off the panel—which was moderated by the Financial Times’ global pharmaceuticals editor, Sarah Neville—was Jessica Scott, MD, JD, head of research and development patient engagement for Takeda. According to Scott, Takeda has come to see the importance of including more patient perspectives in the drug development process, or what she called “developing medicines with patients rather than just for patients.”

One important way to better engage with patients, she noted, is to give patients their data from clinical trials. Allowing patients to have access to their own information directly benefits patients, who may also elect to donate that data to other research. “Let’s not leave the patient out of this mix,” she said of clinical trials, noting that engaging with patients in a meaningful way is part of the pharmaceutical industry’s job of repairing its declining reputation.

Scott also highlighted the fact that patient perspectives can and should be used to bring value to the research process, particularly insofar as patient voices can help to identify truly unmet needs. She pointed to Takeda’s recent study of a therapy for Friedreich ataxia in which, after consulting with patients and learning that fine motor skills and coordination were the most important factors to patients in their daily lives, the company worked with the FDA to change one of the measures in its clinical trial. The company needed patients’ input, she said, to know “not what we could do, but what we should do.”

Speaking from a tech company perspective was Dan Vahdat, chief executive officer (CEO) of Medopad, a company that is working to validate algorithms that can predict complications across disease states. Vahdat agreed that relationships with patients—and their data—have to provide value back to the patients themselves.

Among Medopad’s offerings is a digital pulmonary hypertension app that allows a patient to measure symptoms, track vital signs, and take a quality of life test, all linked with the patient’s care team. While patients are providing their data to Medopad, “to be able to quantify their disease and tell them where they are and how they’re doing” provides a benefit back to the patient at an individual level.

Eddie Martucci, cofounder and CEO of Akili Interactive, which develops digital therapeutics that are designed to target cognitive impairment, agreed that “humans tend to want to do things when they can get something back out of it.” Thus, using data to improve patients’ experiences in a timely way is “key to unlocking loyalty.” In the case of Akili, the company seeks to immediately adapt its product to the individual user when it receives that information, improving the product “almost in real time.”

Given that consumers are increasingly aware of the pitfalls of companies such as Facebook that collect large amounts of data that are used in ways that do not necessarily align with individuals’ benefit, companies that will succeed in the digital therapeutics space, Martucci predicted, are those who can respond to patients’ data by fulfilling patients’ needs.

Finally, the Right Honourable Lord Paul Drayson, PhD, CEO of Sensyne Health—which works with anonymized patient data from the UK National Health Service (NHS) to facilitate drug discovery and development—agreed that patients are keenly aware that society has changed in the past several years with respect to how individuals’ data are used, and that the public is increasingly concerned that not all of these changes have been beneficial.

In order to gain back the trust and confidence of patients, “we need to make sure the way we do it is seen to be the right way.” Part of demonstrating responsibility will be engaging with patients and demonstrating that data are being used appropriately, particularly with respect to data sets like those from the NHS.

In Drayson’s view, part of showing responsibility with data includes demonstrating to the public how investment in digital tools can reduce costs for national health systems like the NHS by getting the right drug to the right patient at the right time, perhaps allowing for enough cost savings to fund drugs that, today, remain out of reach.