A recent, eye-opening article in the New York Times about the state of trust in the medical profession offers up some interesting statistics about consumer confidence in the healthcare system:
- In 1966, 73% of Americans reported “great confidence” in medical leaders.
- Today, just 34% have that same level of confidence.
- The U.S. ranks 24th in the percentage of adults (58%) who agree with this statement: “All things considered, doctors in [your country] can be trusted.”
- Just 23% of Americans have “a great deal” or “quite a lot” of confidence in the system.
There are major implications for the healthcare and pharmaceutical industry here. If patients don’t trust what doctors tell them, they’re unlikely to adhere to treatment plans or make informed, healthy decisions. Further, they’ll remain wary of participating in clinical trials.
However, there are countervailing forces at work. Patients are increasingly becoming “ePatients”—equipped, enabled, empowered, and engaged. They talk to each other, share experiences, and lift each other up, often in online communities.
So the central question is this: How do we leverage this kind of engagement to involve more patients in research and trial recruitment? The answer: Tap into community. Here’s the Times again:
“Partnering with patients and communities to give them greater say in the goals, design, and dissemination of research can help ease a sense that research is being conducted ‘on them’ instead of ‘with them.’”
The Patient Voice: Improving Patient Experience by Understanding Patient Perspective – Gain valuable patient insights and practical strategies for implementing patient-centricity measures in your clinical trials at ACRP 2018 this April. This session, led by Jeneen Donadeo from TransCelerate Biopharma Inc., will explore patient perspectives gathered from a global survey conducted by TransCelerate and CISCRP, and how the resulting data have been put into action to improve the patient experience. View Session Details
In terms of trials, here’s what that partnership would demand from key players:
- Work with patient advocacy organizations in designing trials. A quick search on Guidestar reveals more than 61,000 health nonprofits, so research and development teams can surely find organizations from which to gather valuable patient insights on the purpose and planned execution of their trials. Those designing trials can also identify patient influencers (it can be as easy as using a disease-related hashtag) and reach out to ask for input.
- Harness the missions of patient communities and advocacy organizations in trial matching. Advocacy organizations want accelerated medical research and access to research studies. Organizations like JDRF and the Muscular Dystrophy Association are promoting trial-matching capabilities themselves. In so doing, they’re encouraging their communities to trust medical research and the search process.
- Serve the ePatient to boost enrollment. Site teams and their recruitment vendors can make a big impact by clearly informing patients about their options and making their decision to participate in a study as easy as possible. In a world where nearly 30% of patients are going online to read about other patients’ experiences, word of mouth is critical. Sites that truly cater to patient centricity and care will build trust among local patient communities.
In the end, researchers can reestablish trust by listening to ePatients and the communities that nurture them. It all comes down to the determination of researchers to foster true partnership with patients and patient communities.
To share your thoughts about issues to address in future columns, or to raise any questions about how patient centricity is affecting the clinical research enterprise, feel free to contact email@example.com.
Author: Grace McElroy, Head of Partnerships and Distribution at Antidote