W-20: Designing a Patient-Centric Web-Based Registry

Poster Presenter

Larry Veal

SVP North America
AlphaLife Science
United States

Objectives

Outline a process for obtaining insights into the needs, motivations and barriers of patients, and apply these insights to the design of an impactful online registry that meets patient needs, uses patient-centric language, and provides motivation for enrollment and retention.

Method

Secondary research and patient interviews were conducted to understand the impact of a cardiac condition on patient lives, as well as patient needs, motivations, and barriers as they relate to participation in a web-based registry. Findings were applied to registry design and patient strategies.

Results

A review of recent behavioral literature, social media postings, and online patient websites formed a basis of understanding which was applied to the development of a semi-structured qualitative interviewing guide. Patients were then interviewed to obtain qualitative insights into the impact of this condition on their daily lives, their healthcare-seeking behaviors and treatment decision-making, and their opinions related to participation in a web-based disease registry. Additional data was collected during the interviews to identify common patient vocabulary, motivations for enrollment, avenues for targeted recruitment, barriers to participation, and methods for long-term engagement in a registry. Data was summarized and presented to the registry development team, along with recommendations for registry visual design, branding, wording, motivational messaging, patient recruitment strategy and tactics, and tactics for patient retention. The resulting registry has been designed to be patient-centric and is actively recruiting participants. Insights obtained from this process have also been utilized by the Sponsor in planning for future research and for commercialization activities.

Conclusion

Obtaining insights into the impact of a condition on patient lives and input into registry design features can positively impact recruitment, enrollment, and retention in a web-based registry. Plans related to the design of the registry, and to avenues for patient recruitment and retention, need to be tested with the intended audience prior to the Sponsor making investments in registry design, development, or implementation. By conducting secondary research and in-depth telephone interviews with patients, the Sponsor can obtain the understanding that is necessary to develop a web-based registry that resonates with the targeted patient population and can recruit and retain the required number of patients to provide scientifically valid data in support of their research questions.