Engaging patients and families in their care has been a longstanding goal for quality improvement. Engaging patients and communities in research is an emerging field of work and collaboration, and a recent Medical Care article discusses some similarities and differences between engaging patients and communities.
Why do we engage communities and patients in research? To create better research that is more relevant to those receiving medical care. From the perspective of PCORI, meaningful involvement of stakeholders, including but not limited to communities and patients, can also increase the uptake of research–delivering better results to patients faster than traditional research that lacks engagement. Since everyone participates in healthcare at some point during their lives, it is one of the few features of society that touches everyone. Keeping research in the area meaningful and trustworthy to the public is necessary so it can be used to improve health.
Both the American Recovery and Reinvestment Act of 2009 and the Patient Protection and Affordable Care Act of 2010 clearly encouraged including patients in comparative effectiveness research and tied money to this objective. Since then, the number of research papers and projects about “engagement” has drastically increased, each with different definitions.
The proliferation of different terms and role descriptions is confusing for patients, stakeholders, community groups, and researchers. The confusion from using different terms is likely to promote misunderstanding and dissatisfaction with engagement in research–exactly the opposite the goal. This problem mirrors that encountered by interdisciplinary researchers.
In a recently published Medical Care article, Kim Kimminau, Cheryl Jernigan, and colleagues noted that while patient and community engagement are both based on trust and mutual benefit, they are in fact quite strategically different — so different that they may require a different lexicon, in addition to different strategies. The study germinated from difficulties experienced by the Greater Plains Collaborative (GPC), a PCORnet clinical data research network. The GPC includes partners from Kansas, Missouri, Iowa, Wisconsin, Minnesota, Nebraska, and Texas. The core leadership team of the GPC noticed distinct differences in both the willingness and the approach used to engage patients at partner sites in process of developing a Patient Advisory Council.
A “compare and contrast” table developed by members of the core leadership team became the starting point for discussions. The authors devised an online approach to allow participants to work on the table in real-time, with additional electronic follow-ups. After these discussions among the members of the GPC sites, additional refinement was undertaken at North American Primary Care Research Group meeting workshop with a broader audience. At this workshop, a combination of the World Cafe and Future Search strategies were used to solicit feedback.
The results compare and contrast patient and community engagement for each of several characteristics. The characteristics covered are trust, the source of common interest, perspective or point of view, durability, history, involvement, orientation, beliefs and values, stigma/misconceptions, audience, the role of team “connectors,” and communication. All of these characteristics have the potential to affect the extent, meaning, and success of engagement in research.
So, how do we advance meaningful engagement? The authors suggested 3 main points:
- Assuring clarity of purpose and effective communication coupled with shared common language is essential.
- Continue expansion of engagement rubrics (pdf) to account for novel approaches.
- Greater attention is needed to understanding the complexity of trust in these relationships.
Check out the rest of the October 2018 supplement for related articles.
Cheryl Jernigan