JMIR Publications

ABSTRACT

Background:

People with lived healthcare experiences (often referred to as “patients”) are increasingly contributing to research and other areas of healthcare, but are rarely presented with funded opportunities to directly connect and learn from one another without the agenda-setting of sponsoring organizations. Unfortunately, opportunities to participate in medical research and innovation generally recognize neither commonplace diversity criteria, nor the specific talents and interests of patients; rather, they settle for “checking the box” of patient participation as easily as possible. As a result, specific archetypes for patient participants have been identified: the “difficult” patient; the “complex” patient; the “absent” patient; the “good” patient; or the “smart” patient. Unfortunately, these labels (not created by patients) fail to help researchers, healthcare practitioners, or patients understand how to match patient strengths, skills, and expertise with participation opportunities.

Objective:

“Convening The Center” (CTC) aimed to bring together “people known as patients” – the center of healthcare – to address priorities as they defined them.

Methods:

Originally designed as an in-person gathering, due to COVID-19 it become a series of virtual gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 total participants. The CTC cohort consisted of 22 women and three men from the United States, Costa Rica, Sweden, India, and Pakistan.

Results:

Each participant was interviewed on Zoom, and interview data was thematically analyzed to design subsequent small-group, then full cohort Zoom sessions. The interviews and gatherings for CTC offered unique perspectives on patient activities in research, health innovation, and problem-solving. This study developed a novel framework for assessing across two spectrums different experiences that patients may have or may seek to gain, based on what patients actually do, and different levels ranging from individual to community or systemic level involvement.

Conclusions:

Descriptors of patients in academic literature typically focus on what healthcare providers think patients “are,” rather than on what patients “do”. In contrast, the primary result of this article is a framework for mapping what patients “do” and “where” they do their work, along two spectra, from creating one’s own project to contributing to work initiated by others, and from working at levels ranging from individual to community to systems. Better understanding this can enable researchers to more effectively engage and leverage patient expertise in healthcare research and innovation.