Dr Nancy Dreyer Highlights the Advantages of a Direct-to-Patient Approach in Observational Research

Direct-to-patient approaches give insight into how a patient really feels and encompasses their true day-to-day lived experiences, says Nancy Dreyer, PhD, MPH, FISE, chief scientific advisor to Picnic Health and adjunct professor of epidemiology at the University of North Carolina at Chapel Hill.

Dreyer was 1 of 5 speakers for the panel discussion "Missing Link for HEOR: A Path Forward for HEOR Data Integration," during ISPOR—The Professional Society for Health Economics and Outcomes Research meeting taking place May 5-8 in Atlanta, Georgia.

Transcript

How do direct-to-patient approaches differ from traditional observational research methods, and what advantages do they offer in terms of capturing a more comprehensive understanding of the patient experience?

I’m so glad you asked that question. Traditional observational research has always used existing data like health insurance claims and, more recently, electronic medical records. But [with] direct-to-patient approaches, you get to find out how the patient really feels; what their lived experience is, either with the disease or with a treatment; and often you get to find out things that even the clinician may not know, either because they don't have a strong relationship with the patient, or the short time of the encounter, or the limited time for notes. So, you get the real truth from patients.

Can you elaborate on some examples of how direct-to-patient approaches have been used to enhance the depth of real-world data collection in observational research?

Some of the best ways that direct-to-patient research has been done are ways that help both the researcher and the patient. For example, take a consented patient: If you're able to enroll the patient directly and get them to consent to participate in a study, this allows you to do 2 things. First of all, it allows you to tokenize their data for data linkage with other data-like health insurance claims and pharmacy claims. It also allows you to act as their agent to assemble their medical records across the entire health system, even if they've seen clinicians outside of their own system. So, the that the patient is the only throughput throughout the whole clinical experience is really important. And it's also important for their nonclinical experiences. So, all the lived experiences, the quality of life, the ability to get out of bed and greet the day.

What tools or strategies have been employed to support greater patient retention in observational studies utilizing direct-to-patient approaches?

One of the things I'm most excited about are the direct-to-patient tools that actually give the patients something they can use every day. For example, giving them back their data in an organized fashion that allows them to better manage their clinical care. That's a huge gift. We also shouldn't forget the value of just reimbursing patients for their contribution. I've been doing direct-to-patient research for about 15 years, and in focus groups, people always say the same thing. You value what the clinician tells you, [so] "show me you value what I show you." And we also know that that has a strong improvement in retention. Not as strong as giving them a tool they can use, regardless of the research program, but it sure does help.