When a research team first chooses specific questions for a study, the options may seem endless. Scientists and funders have traditionally been in the driver’s seat in determining research topics, but this is not always the most patient-centered approach. For example, recent reviews of studies of cardiovascular disease and diabetes indicated that fewer than a quarter of the trials included as key measures what the authors considered to be outcomes useful to patients for decision making, such as death, illness, or specific patient-reported outcomes.
In recent years, we’ve seen greater efforts to generate evidence that can more directly inform day-to-day practice. We’ve also seen the research community, in response to expressions of interest by patients and others within the healthcare community, increasingly include these stakeholders in the process of identifying and prioritizing research questions. Indeed, such an approach is a core commitment at PCORI and in the studies we fund.
What is still lacking, though, is an established body of research on the best mechanisms for involving stakeholders in this process, so the researchers, patients, and other stakeholders can look to solid guidance on how to make the research process more patient-centered from the start.
How PCORI Can Help
We at PCORI see this as an area where our focus on improving methods for advancing patient-centered outcomes research can make a substantial contribution, with a particular focus on ways to ensure that a range of stakeholder voices is heard in the research prioritization process. Here are some of the studies we’re funding to do just that:
A project in Washington State compares surveys, focus groups, and online crowdsourcing as methods for including the patient voice when setting research priorities. The team is asking whether these patient engagement methods are similar in time required, cost, participant satisfaction, and the priorities that emerge. It also will consider whether characteristics such as age, gender, ethnicity, education, and disease severity influence participation in these engagement activities. The outcomes of this study, which will demonstrate the comparability of these methods, will aim to inform researchers on what prioritization methods might be most appropriate and effective in future studies.
A second project, in Virginia, is testing a new method, called SEED (Stakeholder Engagement in quEstion Development), for engaging stakeholders in the generation of research questions that are relevant to their home communities. The project takes place in both a rural and an urban setting using a research team in which community members and researchers contribute equally in data collection and decision making. This method is designed to be efficient, sustainable, and appropriate for a broad range of research teams. Results from this study will offer methods to other researchers to generate research agendas consistent with patient-centered principles across diseases and populations.
Another project, in Oklahoma, looks at examples nationwide of long-term engagement between researchers and patient- and community-based organizations to identify the most effective methods for prioritizing research. Building on current best practices by high-performing partnerships, the project aims to move the methods field by developing guidance for stakeholder engagement in research prioritization.
What We’re Learning
Although these projects are still in their early stages, two common themes are emerging.
The first is that determining processes for stakeholder engagement in research prioritization doesn’t have to start from scratch. We can learn from existing partnerships that engage stakeholders when developing new engagement methods for application in other communities. The three projects noted above each utilized existing partnerships and networks as starting points for their research.
The second theme is that engagement methods for prioritizing research questions are not one-size-fits-all. Research teams, when choosing a strategy, must consider the strengths and limitations of engagement methods as they relate to the various phases of the research being planned and the capacity of the academic and non-academic research partners. PCORI’s methods portfolio aims to create a menu of best practices so that other researchers can determine what would likely work best given a particular setting, partnership, and/or health condition.
You don’t need to work directly with a researcher to help determine research topics. You can contribute potential research questions directly to PCORI on our website, you can learn more about our research prioritization process here, and you can always send us your thoughts on our work at [email protected].