Engaging patients throughout the research process is an important part of ensuring that the resulting research is meaningful, trustworthy and translatable, according to health care stakeholders who gathered for an interactive symposium in Washington, DC, on September 30, 2013.
Dr. C. Daniel Mullins, professor of pharmaceutical health services research at the University of Maryland School of Pharmacy, explained that engaging patients throughout the research process will help to ensure that the research performed “is meaningful in the end.” “If you ask [patients] how they would phrase the question, then it’s easier to phrase the results into something they can understand,” Dr. Mullins said.
There are different ways to engage patients, such as meeting with them at health care facilities or at institutions like churches, he said, but “pre-engagement”—before the research begins—is also a key part of it. “You have to meet patients where they are. If you take time to listen, we get to the question more quickly, so it’s easier to find the answer,” he said.
During the symposium, “Putting Patients First®: Paving a Path to Useful CER,” stakeholders provided feedback on a draft set of “usability” criteria to assist in the evaluation of comparative effectiveness research (CER) findings. The criteria, developed by the National Health Council and Avalere Health, are meant to help researchers prioritize study questions and to help patients and their health care providers determine whether CER findings are relevant to them and can be trusted for use in making treatment decisions.
Dr. Mullins added, “If the patients don’t understand the question, then they could provide us with data that’s not accurate information. If we then use that to make a decision that’s informed by that data, then they won’t be making the right decisions,” Dr. Mullins explained.
Myrl Weinberg, chief executive officer of the National Health Council, said that many patients are still concerned about how CER will be conducted and used to make treatment decisions. Patients want to make sure that CER does not result in a "one-size-fits-all" approach to health care and that it will be used in appropriate ways. Usability criteria could make this evaluation process much clearer for decision-makers, she noted.
The criteria have been in the works for some time, noted National Pharmaceutical Council (NPC) President Dan Leonard. Usability criteria were first under discussion as part of the Affordable Care Act in 2010, but they were not included in the final law. Since that time, NPC, along with NHC and other organizations, have continued to lead conversations about how stakeholders can use and communicate CER, resulting in a cluster of Health Affairs articles and a briefing last October.
The “Putting Patients First®” symposium marked a key point in the development of the draft usability criteria, which were developed months earlier during a stakeholder dialogue, said Avalere Health Senior Manager Sung Hee Choe. She said the criteria could be a tool to help researchers prioritize research questions and to help patients distill the vast amount of health care information available to them.
Following the feedback from conference participants, NHC plans to further refine the criteria and seek feedback and testing during workshops in coming months.
The symposium was sponsored by the NPC and NHC, along with cosponsors the Patient-Centered Outcomes Research Institute and PhRMA.