By Nate Warren, MPH, Research Associate
Another large topic addressed at NAPCRG, admitting I’m pushing the boundary to encompass several sub-topics under one theme, was patient-centered care. I’m referencing the Institute of Medicine’s definition here as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”1 Working off of NAPCRG conference app’s search results, there were at least 71 presentations (including oral, poster, and workshop) that pertained to this topic.
Personally, I’m excited for this theme as it related directly to both projects I was representing at NAPCRG (MyPreventiveCare2 and ADVANCE3), as well as my other work at OCHIN around our hosted patient portals (both Epic® MyChart4 and the NextGen®5) and projects focused on engaging community members and patients directly in research design and implementation through technology, member forums and leadership roles. This was also a fascinating topic in terms of how much diversity in definition I saw around the term “patient-centered care” and what aspects were focused on, using the two primary example activities mentioned above.
“Our research moves at the speed of trust” was a plenary presentation statement that really struck me as a fundamental perspective for how we as researchers approach communities and clinics to partner with on projects. This particular speaker, Dr. Ann C. Macoulay, CM MD, FCFP, FCAHS, FRCPC (Hon.), is a bit of a celebrity in the world of Community-Based Participatory Research (CPBR)6 and I was fortunate to hear from her not just in the plenary session, but through a pre-conference “Patient and Clinician Engagement (PaCE)7” training. She spoke in partnership with a consortium of co-leaders in initiatives in indigenous communities and Canada, with a video of their full plenary presentation available here.
General themes coming out of both the pre-conference PaCE training and the referenced plenary session looked at actions to make research more relevant to the community of focus, with CPBR strategies to build trust and design effective methods across a project’s lifecycle, from proposal to dissemination. This was summarized succinctly and effectively through the session’s description below:
“Research that involves authentic engagement, co-creation and participatory research with individuals, organizations and/or communities is designed to improve health and wellness and to minimize health disparities. Narrative and results/findings that evolved from co-created, community-chosen research and interventions will illuminate the strengths and opportunities for change identified by the community. Thus, for community-chosen research and interventions to be successful, all aspects of the research process must be co-created, co-designed, co-implemented, co-presented and co-published; and, academic researchers must be co-facilitators.”8
Community engagement was also emphasized at a NAPCRG workshop entitled “Engaging Nemo: Recruiting and Retaining Hard-to-Reach Populations.” One of the most challenging aspects of research, especially in patient populations such as those Medicare, Medicaid and otherwise underserved here at OCHIN, is to be simultaneously successful in both capturing authentic patient representation in sampling, while also meeting criteria for research methodology, such as reaching effective statistical power analysis. Another way to put this is that too often, the voices you need to hear in your research the most are often juxtaposed as those most difficult to reach due to socioeconomic barriers in technology access, housing insecurity, complexity in support for language and/or cultural considerations and overall social determinants of health constraints.
This workshop offered some great solutions in unconventional sources for sampling (e.g., homeless counts, public health surveillance) and the participants also mentioned several key tactics through partnerships with community-based organizations who may be capturing both quantitative and/or qualitative data themselves. Another learning from this workshop centered on staffing and the consideration for hiring community partners as a successful budgeting model to support the scope of the project, especially around recruitment design and any direct patient outreach efforts with use of a tailored IRB training provided by the CITI Program.9 Another fantastic application for effective engagement in research projects with qualitative components (e.g. interviews, surveys) was to conduct mock interviews with patient advisors well before a project team hits the field. Lastly, I though a strategy to consider investment in trauma-informed care training for members of a project team (such as the options available at Trauma Informed Oregon, or TIO)10 was an incredible insight for working with communities where the impact of potential adverse experiences on children, adults and families may be likely and, as TIO describes, “promote and sustain trauma informed policies and practices across physical, mental, and behavioral health systems and to disseminate promising strategies to support wellness and resilience.”
Another major research focus, specifically themed around patient-centered care, was work around the opioid epidemic. We are unfortunately too familiar with this in the United States, but it was also described across several international presentations from Canada, Mexico and other countries presenting at NAPCRG. I found interest in presentations looking towards patient-reported outcomes in this line of research, among other topics. In particular, the subject of “catastrophization of pain” came up as a hesitation from providers about whether patients feel like they won’t be treated unless they overestimate the pain threshold. Researchers gave physician-reported examples of numerical scales on how a patient may consistently state the highest level of pain under a 1-10 scale, but also be reporting ease of sleeping or other activities of daily life (ADLs)11. The presentations brought forward an intriguing consideration to have patient-reported outcomes that are more contextualized outcomes for functional capacity, such as asking patients “When was the last time you were in this much pain?” or “What’s the worst pain you’ve ever had and how does this compare?” rather than gauging simply off of numbers in a pain scale.
A fascinating related project entitled “selfBACK”12 utilized decision support13 technology to develop a self-management plan, which aims to save both time and monetary resources in the field of low back pain. The team mentioned their tool in context with a need to enhance research for the limited evidence on benefits of digital interventions in back pain. Lastly, there was a group of researchers conducting a project with qualitative semi-structured focus group interviews to explore perspectives of participating practice physicians and nurses for primary care management of chronic pain patients. Of interest were outcomes that providers often feel highly committed and responsible towards improving patients’ pain but are also often unsure, frustrated, conflicted or unable to do so. A crucial interview response from this collection of presentations around opioid research came from a clinical resident in a project who stated: “I think one of the hardest things about pain is that it’s so subjective. And, we can’t feel what our patients are feeling.”
As a final focus around the topic of patient-centered care, NAPCRG had a compendium of presentations around portals and other technology interventions, such as tablets available for health information and screenings. Qualitative analysis of provider and patient perspectives on MyChart® Bedside14 use on a tablet from one project showed intriguing outcomes, such as increases to patient and family accessibility to health information and communication with their care team as a source for reduction of patient anxiety during admission. I thought the same study had a smart allegorical quote from qualitative data, with a physician stating: “When interacting with patients using MyChart Bedside, it’s kind of like they did their reading prior to…like a class, I guess you could say.” While the study showed several positive outcomes, they also had a few barriers described around resourcing constraints, patient preference of smartphone use over tablets or even overall disinterest or socioeconomic barriers in technology. Another project used an asthma shared decision-making interface in a waiting room tablet and boasted an increase in asthma care knowledge and SDM, both being drivers of asthma health outcomes. Another project created a pharmacist-led intervention incorporating home blood pressure monitoring and medication reminders for patients in a primary care setting, called mHealth.15 While medication adherence didn’t appear to improve, the project was effective for significantly (yes, the statistical kind of significantly!) reducing systolic and diastolic blood pressure and exhibited high degrees of participant satisfaction and positive perceptions. This led researchers to conclude that the intervention was a feasible and acceptable approach for blood pressure control in this population. Lastly, I was so excited to see a project design an email interaction complexity assessment tool through patient portal chart audit, as this helps physicians form a standardized process towards estimating amount of time spent on clinical emails to allocate resources accordingly. The project triaged patient messages into high-middle-low categorizations and exhibited a high agreement of 85% by independent reviewers on the classes of email interaction definitions and they’re now moving towards gaining tool validity with expanded recruitment, time and testing in new and additional patient populations.
To end, the volume of relevant NAPCRG research and opportunities to learn through workshops, trainings, poster and oral presentations in Montreal was pretty overwhelming! That said, perhaps the most rewarding outcome (besides dinner with my OCHIN team) was recruiting a patient advisor I met at a pre-conference training to an OCHIN project, continuing a network opportunity in the most authentic sense! NAPCRG 2017: 10/10 would recommend.