From Stage 2 Meaningful Use to patient-centered medical homes, patient engagement represents the next aim of healthcare reform through the adoption of health IT systems and services. The most recent wave of top-down support for patient engagement came from the Patient-Centered Outcomes Research Institute (PCORI), which awarded $93.5 million for the creation of 29 clinical research data networks that will combine to form its National Patient-Centered Clinical Research Network (PCORnet).
According to one of the awardees, Kaiser Permanente, a major aim of establishing these networks is to enable the patient population to play an active role in how their care is delivered. “One of the reasons people think we should be engaging patients more actively is to make sure that as we do research we’re measuring and assessing the kinds of things they want to know when they’re making medical decisions,” says Elizabeth McGlynn, PhD, Director of the Center for Effectiveness & Safety Research at Kaiser Permanente.
“While we appreciate that more traditional biometric information may be important,” she continues, “there are a number of other things that any of us who have had to make decisions about whether or not to have a surgical procedure or take a particular drug would like to know beyond some of that information.”
McGlynn and her team of researchers will rely on its network, Partners Patient Outcomes Research To Advance Learning (PORTAL), to change how a healthcare organization learns from its patients, namely in bridging the gap between the latter and researchers. “The whole area of engaging patients more actively and comprehensively in research is an evolving one. While we have ideas, we will be learning along with other folks the way that we can do that more than we’ve done in the past and as effectively as possible,” she notes.
In particular, Kaiser Permanente and its partners — Group Health Cooperative, HealthPartners and Denver Health — will focus on three areas where patient engagement could have a positive impact on healthcare delivery: obesity, colorectal cancer, and congenital heart disease. As these diseases evolve so must the way providers communicate with patients, something made possible through new and emerging patient engagement tools.
At a high level, the challenges for the project are two-fold. On the one hand, researchers need to be able to understand how patients want to be engaged:
We know that patients aren’t homogenous; we know that there’s a range of opinion. These kinds of tools give us the chance to continue to appreciate the diversity of ideas and opinions and avoid trying to just get to the one or the two leading ideas but really to think. As people are exploring the notion of what personalized medicine means, how do we make sure that we’re eliciting information from people about what’s important to them personally?
On the other hand, they must tackle the challenge of making this feedback available to clinicians in a meaningful way:
One of our big challenges is finding ways to effectively integrate that information into the electronic health record. We have some work underway right now that’s given us some early insights into what patients are willing to provide if their doctors are going to see it and use it but if it’s just a hypothetical exercise, not so interested.
That’s not to say that these two challenges are distinct from each other. In truth, they will both be overcome by increasing the ease of use and accessibility of information, a responsibility that falls to this team of researchers.
“It really does mean investing some additional time and energy in translating information that researchers might understand and making it meaningful to clinicians and easy to use by integrating them with the other kinds of clinical information are using for decision-making,” says McGlynn.