Disruptive listening to better engage patients in research: highlights from the Patients as Partners Europe Virtual Conference

Written by Sergio Diaz and Krystallia Pantiri on Thursday 11th February 2021

Disruptive listening as a way to increase patient engagement in research was but one topic explored in the Patients as Partners Europe virtual conference that took place January 25th and 26th. The virtual nature of the conference allowed for live chatroom discussions and the exchange of insights and knowledge.

Patients want to be heard. We know that, and yet many times as researchers, we end up boxing in the patient perspective by limiting it to a discussion guide, ad board topics, or the agenda in a patient panel discussion. Disruptive listening means letting patients talk freely, outside the agenda, and then listening in an open-minded way so as to discern subtle insights that could inform the research. Some research methods that incorporate disruptive listening include social media listening or interviews and group discussions; disruptive listening can take place in any environment where patients can speak freely about their disease, its treatment, and its overall impact on their life.

Beyond disruptive listening, this year’s conference covered other topics around patient engagement and the importance of building relationships with patients based on the mutual interest between patients and researchers. The conference emphasized how building relationships with patients can have a profound impact on research results, delivering a sharper focus and better endpoints than research lacking real patient input.

Additionally, there were topics impossible to ignore, like the challenges of COVID. Yet the COVID crisis has shown us new ways to reach patients through technological solutions that years ago no one would have imagined.

Diversity and inclusion

The topic of diversity and inclusion was addressed in different ways in several sessions. Inclusivity was clearly important to attendees. Such a level of interest suggests a need to reach out to patients and engage with them in ways that respect patient diversity and enrich the study or the clinical trial. Accomplishing this requires that researchers understand the potential impact of ethnicity, race, and cultural and social differences on their own perception of the patient. Understanding the reality of underrepresented communities is critical for introducing diversity into clinical trials. It cannot happen in a lab or research center. Rather, this understanding comes from spending meaningful time with diverse communities and building trust.

One key to winning acceptance and trust is bringing the research to the people and explaining how it addresses a critical community issue, such as a high rate of diabetes type 2. How to really spread the message? Engage with religious leaders and community champions who will open doors for you if they see how the research addresses a community need.

Learning by sharing

The conference served to bring together patients and their advocates in the research community. Getting patients involved in all phases of research and development emerged as a theme of the conference: ranging from early development to after launch period, training programs and tools, guidelines on enhanced procedures for interaction and collaboration. The conference served as a great platform for new initiatives to be presented. Stakeholders from the industry shared their experiences launching and sustaining patient engagement initiatives within their organization. They talked about the challenges they face and opportunities they have, sparking discussion with tales of their successes and hopefully driving change and evolution. It was promising to see teams within the industry advocating for changes in how patients are involved in research. Sharing knowledge and experiences in the field can hopefully lead to change globally and across functions.

Feeding back to the patients

Meaningful engagement and partnership presuppose that input and information flow both ways equally. Several times in the conference we listened as a speaker stressed the importance of feeding back to the patients before a project, during a project, and after a project finishes, outlining how patients’ input is intended to be used. We heard how important it is to inform patients as to how their input will be used, what the research outcome is, and to what extent their input was incorporated in that outcome—and if not, why not? Measurement of progress in this direction is a way to hold the participants accountable.

What does this mean for patient-centered outcomes?

At OPEN HEALTH, we are committed to hearing and acting upon the patient voice through innovative research for our clients. We are proud to have co-created projects with patient advocacy groups that employed disruptive listening throughout the project lifecycle. Additionally, we have been improving our social media methodologies to capture the opinion of the patient, outside the research setting. Our deep expertise and broad experience in the field position us to obtain optimal results for both industry and patient groups by gauging the proper phase and type of patient engagement throughout the project development cycle.

We are convinced from our experience that having “patients as partners” for our research studies is the best way of moving forward. Our specialized consultants on patient engagement and patient-centered outcomes are working every day to create new strategies and methodologies to incorporate the patient voice into research and the drug development process. 

For more information about co-creation or patient engagement, please reach out.