What does patient centricity in research look like today?
Patient centricity is a phrase that generates a lot of buzz in the clinical research community — it typically refers to designing a treatment, clinical trial, or other health solution around patients’ needs and perspectives. Creating a patient-centric solution involves getting feedback from advocacy groups and patients themselves, and making decisions based on their voices. At the heart of it, patients want to be heard — “nothing about me without me” is a common refrain. In the clinical trial realm, they also want to be able to understand clearly what sponsors are looking for. At Antidote, we think of patient centricity as letting the patient voice drive how we think about the entire clinical trial process.
What does patient centricity in research look like today? We look at three patient-centric approaches to clinical trials that are leading to effective recruitment.
Develop partnerships with patient advocacy groups
With the clinical research industry focused on patient centricity, the patient voice has become increasingly involved in the planning and execution of medical research. As a result of this, the need for partnerships that connect patients with research opportunities — or make it easier to take part — is high.
Advocacy groups help shape and set the research agenda, and open up a dialogue around where needs are not being met in terms of current treatment options. With a deep understanding of their patient population, advocacy groups can also be key players in helping develop new methods of engaging patients in research. Another critical role they play is making sure that patients are informed of the results of studies and surveys they take part in; they can assist with publishing results in ways that are easy to understand, or organizing events to share findings and make sure that people understand the implications.
This brings up a few critical questions: how can we bring the patient voice into the earliest stages of planning? How can studies answer research questions but also follow protocols that are acceptable to patients? Many patient organizations are taking part in dialogue with pharma and biotech sponsors to make sure that the patient (and care partner) perspective is front and center.
Research what patients are saying online
What are patients talking about online when they’re not at a site or a doctor’s office? Incorporating the patient voice into clinical trial design is important, but learning about your target patient population when they’re not in a medical setting is pivotal to understanding a holistic picture of their lives. By engaging with Facebook groups, Reddit communities, Instagram hashtags, and TikTokers, you can learn important things about patients, such as attitudes toward clinical research, what treatment regimens people are using, and what they prefer to be referred to as (ie; COPD patients vs. COPDers vs. people with COPD).
One barrier to patients discovering research online is that available data on websites such as ClinicalTrials.gov is not patient-friendly and does not provide a positive search experience. Simplifying medical jargon so that everyone can participate in the conversation can go a long way, but you’ll only know what to say if you’ve done your research. Positive patient experiences are critical to retention and studies ultimately reaching their endpoints. Listening to what patients are saying online should help you get ideas for how to frame your protocols, how you advertise your clinical trials, and how to keep the patient as the primary focus.
Reach out to patients directly to understand their needs
Speaking directly with patients about their experiences with a given condition and understanding their met and unmet needs is critical. We spoke with John Linnell, a COPD community advocate who, since his COPD diagnosis, has been fighting for COPD awareness, resources, and research, about the importance of clinical research. Linnell says, “I think clinical research for COPD is incredibly important. I think patients need to embrace that and want to be involved. As a COPD community advocate, I’m very involved in research advocacy as well. When I give talks, I always include ‘if it’s without us, it’s not about us.’ I truly believe that, and I think other patients need to as well.”
We surveyed nearly 4,000 patients to find out what would make patients who take part in research feel like partners, not just participants. We asked the question directly: “what would make you feel like a partner in research?” Across all conditions, talking with the doctors, clinical trial coordinators, and nurses involved in the trial was most important to patients. Bringing patients into the picture early, whether it’s asking them a simple question or bringing them on as a co-investigator, creates a new level of investment to individual patients and communities. “We can be partners in care, and hopefully someday, partners in finding the cure,” says Linnell.
Antidote’s approach to clinical trial recruitment is always patient-centric. Our clinical trial recruitment strategies can save sponsors time, while providing a positive trial search experience for potential participants.