John M. Westfall

Validation of the EQ-5D quality of life instrument in patients after myocardial infarction.

AbstractBackground: We assessed cross-sectional validity of EQ-5D after myocardial infarction (MI). Methods: We compared EQ-5D, SF-36, quality of life After MI (QLMI), and Canadian Cardiovascular Society Anginal Classification (CCSG) scores. Correlation and regression techniques were used to assess convergent validity. SF-36 and alternate Rand-36 scoring were compared. CCSG class was used to evaluate discriminative validity and clinical difference in health state scores. Results: Of 99 patients: mean age 64; median 176.5 days post-MI; 80% had one MI; 74% were CCSG I. 1/3 to 1/2 reported mobility, self-care, pain, and emotional difficulties on EQ-5D. Median health state was 0.73. EQ-5D and SF-36 (or Rand-36) strongly correlate in overall health (0.75), emotional health (0.75), pain (0.68), and activity/ functional (0.5–0.63). EQ-5D and QLMI strongly correlate in activities/ self esteem (0.56), emotional health (0.64), anxiety/depression – restriction (0.53), and overall health (0.5–0.57). EQ-5D self-care correlates weakly with all domains. Domain scores from each general instrument contributed to each other’s overall health score (adjusted R2 0.61–0.69) and to disease specific score (0.45 adjusted R2). EQ-5D discriminates among CCSG classes (p < 0.000). Physicians detected a 0.16 difference in health state scores. Conclusion: The EQ-5D provides valid general HrQOL measurement post-MI.

Repeat Abortion and Use of Primary Care Health Services

One-third (34%) of 2,001 women who sought an abortion in 1991-1992 in Wichita, Kansas, were repeat-abortion patients. Compared with first-time abortion patients, repeat-abortion patients were significantly older, more often black, and younger at their first pregnancy (p < .001). The two groups did not vary significantly by income or age at first intercourse. However, repeat-abortion patients were significantly more likely than first-time patients to have been using a contraceptive method at the time of conception (65% compared with 59%) and more likely to say they always or almost always used a method (63% and 53%, respectively). More than 40% of women in each group reported they had no personal physician. Further, 34% of repeat-abortion patients said they had no follow-up examination after their previous abortion, and 28% said they received no contraceptive counseling. Only half of women whose pregnancy was confirmed by their personal physician obtained an abortion referral from that physician.

T4 Translational Moonshot: Making Cardiovascular Discoveries Work for Everyone

> That’s one small step for (a) man, one giant leap for mankind > > —Neil Armstrong; July 20, 1969 How could walking on the moon help mankind? The purpose of the 1960s NASA moonshot was to put a man on the moon. To what end? What might a stroll on the moon actually mean for America and humanity? If the Moonshot was about leaving a few footprints on the moon, it would have only fulfilled half the mission. But it was about more. The 1960s arguably saw one of the most dramatic accelerations in the pace of scientific discovery in the past 100 years. The outcome was so much more than footprints on the moon. The scientific discoveries necessary to put that human on the moon were translated out into the nation in hundreds of ways. Yes, the primary aim was space exploration, a human lunar landing and safe return to earth. However, the translation of those discoveries improved nearly every American life in ways we could not imagine in 1960. We are on the cusp of another giant leap for humanity as we face the unparalleled discoveries in cardiovascular disease prevention, treatment, and management. The pace of discovery has accelerated, providing another opportunity for broad translation that can impact every American. From new drugs and newer devices to genetic risk and precision treatments to social determinants of health and local prevention strategies, the pipeline of discoveries has reached gravitational escape velocity. The scientific momentum energizing discovery science in heart disease and health could carry us to the moon, perhaps even Mars. But it would not carry us above the clouds without translation into the clinic, community, and culture. And that translation now requires engaging the practices (T3 translation) and the community (T4 translation) to make the discoveries meaningful and feasible in …

Farming, Ranching, Research: Patient Engagement on the High Plains

T welve years ago my husband and I were happily content with the challenges and rewards of tending our fourthgeneration dryland wheat farm. I was also teaching English reading at the local community college. Then we were asked to be part of a rural healthcare research team—to participate not as study subjects but as community-based researchers. At that time, the concept of engaging patients in the research continuum and as co-researchers was considered experimental and, by some hardcore scientists, a bit quaint. Twelve years ago, I knew little about patient engagement and nothing about medical research. If asked, I would have said I was an engaged patient, informed about my own health. I stayed abreast of research as it was presented in the popular media. I maintained an active relationship with my primary care provider, and I felt empowered to ask hard questions, advocate for myself or my family, and demand some control over my health care decisions and actions. But, bottom line, I was and am a patient; I am not a researcher. Yet, here I am, commenting on today’s research on patient engagement. Engaging patients as co-researchers—co-creators, coinvestigators, partner advisors—is crucial to the successful translation of medical discoveries into everyday clinical practice. When I first had an opportunity to ask questions that matter to my community, to ensure that the participatory research process met the needs and personality of my small town, to improve the health of my community, I was a bit skeptical...and intrigued. I joined the Community Advisory Council of the High Plains Research Network (HPRN C.A.C.), created to complement the practice-engaged research of our university-based research network. The HPRN was collaborating with doctors’ offices and clinicians in rural and frontier Colorado, but something was missing. Research was happening, but the questions were not relevant to primary care practice or their patients, and the answers were not aligned with the way we in the community lived our daily lives. The missing piece was the patient voice and the real-life context that it brought to the research. Without this context, the research lacked local relevance and was, consequently, low impact. This is where I entered the world of patient-engaged research. For the past 12 years, I, along with a group of about 18 other community members, have straddled the fence between the university research world and our everyday lives in rural eastern Colorado. The High Plains Research Network is not alone. Patient, stakeholder, community member, and practice engagement has taken off and is now the norm in many academic settings. The National Institutes of Health’s Clinical Translational Science Awards encourage and support patient-engaged participatory research. The Patient-Centered Outcomes Research Institute (PCORI) requires active patient and stakeholder engagement in the research it funds. Patient engagement is a broad continuum of activities and participation, from fully engaged community-based participatory research (CBPR) to the less engaged individual patient representative sitting at an annual board meeting. While there is a robust body of literature on CBPR, less has been studied and disseminated on the rest of patient engagement. The two terms are not interchangeable. CBPR is one type of patient engagement. Patient and stakeholder engagement in patient-centered outcomes research (PCOR) falls along a broad continuum of engagement and participation. Common key elements are found across the continuum; however, the rest of patient engagement includes a wider variety of methods, locations, and research topics. The work of Forsythe and colleagues signals an important milestone in the progress toward more genuine patientengaged research. They studied the first group of PCORI pilot awardees, measuring patient engagement efforts actually occurring in the projects. They gathered data on the level of engagement, length and nature of engagement, facilitators and barriers to engagement, and how engagement impacted the research. This report provides an early understanding of the range of patient engagement strategies, activities, and lessons in PCOR. Their report is a starting point for patient engagement in the PCORI research portfolio and confirms key tenets that the HPRN C.A.C have found critical for success. Several key components of patient engagement are described. First, patients and other stakeholders can and should be engaged early and often. Successful engagement is not a JGIMT welve years ago my husband and I were happily content with the challenges and rewards of tending our fourthgeneration dryland wheat farm. I was also teaching English reading at the local community college. Then we were asked to be part of a rural healthcare research team—to participate not as study subjects but as community-based researchers. At that time, the concept of engaging patients in the research continuum and as co-researchers was considered experimental and, by some hardcore scientists, a bit quaint. Twelve years ago, I knew little about patient engagement and nothing about medical research. If asked, I would have said I was an engaged patient, informed about my own health. I stayed abreast of research as it was presented in the popular media. I maintained an active relationship with my primary care provider, and I felt empowered to ask hard questions, advocate for myself or my family, and demand some control over my health care decisions and actions. But, bottom line, I was and am a patient; I am not a researcher. Yet, here I am, commenting on today’s research on patient engagement. Engaging patients as co-researchers—co-creators, coinvestigators, partner advisors—is crucial to the successful translation of medical discoveries into everyday clinical practice. When I first had an opportunity to ask questions that matter to my community, to ensure that the participatory research process met the needs and personality of my small town, to improve the health of my community, I was a bit skeptical...and intrigued. I joined the Community Advisory Council of the High Plains Research Network (HPRN C.A.C.), created to complement the practice-engaged research of our university-based research network. The HPRN was collaborating with doctors’ offices and clinicians in rural and frontier Colorado, but something was missing. Research was happening, but the questions were not relevant to primary care practice or their patients, and the answers were not aligned with the way we in the community lived our daily lives. The missing piece was the patient voice and the real-life context that it brought to the research. Without this context, the research lacked local relevance and was, consequently, low impact. This is where I entered the world of patient-engaged research. For the past 12 years, I, along with a group of about 18 other community members, have straddled the fence between the university research world and our everyday lives in rural eastern Colorado. The High Plains Research Network is not alone. Patient, stakeholder, community member, and practice engagement has taken off and is now the norm in many academic settings. The National Institutes of Health’s Clinical Translational Science Awards encourage and support patient-engaged participatory research. The Patient-Centered Outcomes Research Institute (PCORI) requires active patient and stakeholder engagement in the research it funds. Patient engagement is a broad continuum of activities and participation, from fully engaged community-based participatory research (CBPR) to the less engaged individual patient representative sitting at an annual board meeting. While there is a robust body of literature on CBPR, less has been studied and disseminated on the rest of patient engagement. The two terms are not interchangeable. CBPR is one type of patient engagement. Patient and stakeholder engagement in patient-centered outcomes research (PCOR) falls along a broad continuum of engagement and participation. Common key elements are found across the continuum; however, the rest of patient engagement includes a wider variety of methods, locations, and research topics. The work of Forsythe and colleagues signals an important milestone in the progress toward more genuine patientengaged research. They studied the first group of PCORI pilot awardees, measuring patient engagement efforts actually occurring in the projects. They gathered data on the level of engagement, length and nature of engagement, facilitators and barriers to engagement, and how engagement impacted the research. This report provides an early understanding of the range of patient engagement strategies, activities, and lessons in PCOR. Their report is a starting point for patient engagement in the PCORI research portfolio and confirms key tenets that the HPRN C.A.C have found critical for success. Several key components of patient engagement are described. First, patients and other stakeholders can and should be engaged early and often. Successful engagement is not a JGIM

Reducing Cardiovascular Disparities Through Community-Engaged Implementation Research: A National Heart, Lung, and Blood Institute Workshop Report

Cardiovascular disparities remain pervasive in the United States. Unequal disease burden is evident among population groups based on sex, race, ethnicity, socioeconomic status, educational attainment, nativity, or geography. Despite the significant declines in cardiovascular disease mortality rates in all demographic groups during the last 50 years, large disparities remain by sex, race, ethnicity, and geography. Recent data from modeling studies, linked micromap plots, and small-area analyses also demonstrate prominent variation in cardiovascular disease mortality rates across states and counties, with an especially high disease burden in the southeastern United States and Appalachia. Despite these continued disparities, few large-scale intervention studies have been conducted in these high-burden populations to examine the feasibility of reducing or eliminating cardiovascular disparities. To address this challenge, on June 22 and 23, 2017, the National Heart, Lung, and Blood Institute convened experts from a broad range of biomedical, behavioral, environmental, implementation, and social science backgrounds to summarize the current state of knowledge of cardiovascular disease disparities and propose intervention strategies aligned with the National Heart, Lung, and Blood Institute mission. This report presents the themes, challenges, opportunities, available resources, and recommended actions discussed at the workshop.

Quandaries in patient and community engagement in research

Spurred by funding agency initiatives and requirements, a need for full-spectrum translational research, and the significant value of community and patient perspectives held by researchers, patient engagement is a growing reality in the research world. The enthusiasm is exciting to those of us who have been engaging patients for many years. Patient engagement presents potential for new research ideas and approaches, research that is more meaningful to patients and community members, and quicker and more effective translation of discovery into everyday life and practice (1–3). With this new-found excitement comes some measure of uncertainty. The form and depth of engagement, methods and terminology varies widely between funders, community organizations, health and disease advocacy groups, and academic researchers. Questions bubble up in our team meetings, at conferences and in classrooms. Now is a vital time to ask these important questions, to be vulnerable to share experiences and to contribute to the emerging science of patient and community engagement in research. As faculty in the University of Colorado Department of Family Medicine, our research has not been just impacted by patient engagement—it would not exist without patient engagement. For more than 15 years, the High Plains Research Network Community Advisory Council and, more recently, the Colorado Clinical and Translational Science Institute Community Engagement Program and many other groups have engaged patients and community members from all walks of life throughout rural and urban Colorado (4–6). We have experienced a shift from those early questions of the start-up effort to confronting the complex questions that arise when genuinely engaging patients and community members in research. Engagement has long been a topic of conversation and study for the North American Primary Care Research Group (NAPCRG). Spurred on by NAPCRG researchers, this special issue of Family Practice ‘Quandaries in Patient and Community Engagement in Research’ explores questions confronted by researchers every day. The selected articles will provide some answers but will also pose current and new quandaries. We are delighted to present this series of articles that explore patient engagement through commentaries that encourage reflection and a call to action, questions about methods of engagement and examples of the successes and challenges experienced by specific projects.