The potential utilization of a cold-contact approach to research recruitment, where members of the research team are unknown to the patient, has grown with the expanded use of electronic health records (EHRs) and affiliated patient portals. Institutions that permit this strategy vary in their implementation and management of it but tend to lean towards more conservative approaches. This process paper describes the Medical University of South Carolina’s transition to an opt-out model of “cold-contact” recruitment (known as patient outreach recruitment or POR), wherein patients can be contacted so long as they do not express an unwillingness to receive such communication. The work highlights the benefits of this model by explaining how it, in many ways, supports and protects autonomy, beneficence, and justice for patients. The paper then describes the process of standing up the recruitment strategy, communicating the change to patients and the community, and documenting study team contact and patient research preference. Data supporting increased access to potentially eligible patients of greater diversity as well as initial researcher feedback on perceived success of POR is also shared. The paper ends with a discussion of next steps to enhance the POR process via more detailed data collection and reengagement with community stakeholders.

In addition to facing numerous healthcare disparities, rural America is chronically underrepresented in clinical research. This gap was made more evident during the COVID-19 pandemic. St Lawrence Health, located in rural Upstate New York, established its Clinical and Rural Health Research Department in 2015 to help close this gap. The research department then launched the DISRUPTS (Developing InfraStructure for Research to Utilize Patient-centered Techniques at St Lawrence Health System) program to build the infrastructure to conduct Patient-Centered Outcomes Research (PCOR). Together with a diverse committee, the team used proven methods and frameworks to develop a model for engagement, content creation, and education delivery that was successfully used to create educational programs on PCOR and COVID-19. The resulting DISRUPTS webinars had a combined total of over 450 live attendees and over 1,110 views on recordings. Furthermore, nearly one-third of those who participated in the COVID-19 vaccines webinar indicated they were more likely to receive a COVID-19 vaccine after taking part. DISRUPTS can serve as an important model for other rural communities that aim to increase access to and engagement in PCOR, and which hope to improve outreach and education efforts in their communities.

Patient engagement in health technology assessment (HTA) has become increasingly important over the past 20 years. Academic and practitioner literature has produced numerous case studies and best practice accounts of patient involvement practices around the world. This text analyzes the experience of being involved in an Institute for Clinical and Economic Review (ICER) HTA review in the United States. The analysis comes from the joint perspective of three patient organizations: Lupus and Allied Diseases Association, Inc.; Lupus Foundation of America; and Black Women’s Health Imperative, as well as ICER. We suggest that meaningful, patient-centered engagement, where patient communities are systematically integrated throughout the review, can be a way of returning to the discipline’s roots focusing on technologies’ societal and ethical impact. It is a process that requires robust commitment from all involved but produces assessments relevant to those directly affected by them.

COVID-19 has disproportionally impacted older adults, and has highlighted many issues, including extreme deficiencies in Canadian long-term care homes and gaps in home and community care services for older adults. In recent years, there has been a push towards better patient and family engagement in health system research, and with the onset of the pandemic, engaging older adults in research and policy planning is more important than ever. In this article, we describe the Seniors Helping as Research Partners (SHARP) approach to engagement with older adults as an example of how partnerships that engage older adults in the development of research aims and processes can help to ensure that future research meets the needs of older adults. SHARP members highlighted a number of areas for future COVID-19 research such as improvements to long-term care, enhancing access to home and community care, and a focus on aging and social isolation.

Our qualitative descriptive study compared how older patients and their informal caregivers experienced the care transition from acute care or rehabilitation to home. We recruited patients 65 years of age or older, or their informal caregivers, from in-patient units within acute care hospitals and rehabilitation facilities to participate in semi-structured interviews. We identified emergent themes via thematic analysis. In all, 16 patients and four patient caregivers participated. Across all care settings, caregivers were integral in facilitating the transition as well as experiencing variable discharge preparation, health care providers’ optimizing transitions, and missed care and medication discrepancies at transition points. Orthopedic and rehabilitation patients more commonly voiced prior transition experiences in discharge preparation, including having to unexpectedly coordinate and wait for outpatient services. Differing responses between acute care and orthopedic settings suggest that transitional care practices and policies favor an individualized approach that considers patients’ previous experiences, needs, and care expectations.

Evidence is limited on how to synthesize and incorporate the views of stakeholders into a multisite pragmatic trial and how much academic teams change study design and protocol in response to stakeholder input. This qualitative study describes how stakeholders contributed to the design, conduct, and dissemination of findings of a multisite pragmatic clinical trial, the COMprehensive Post-Acute Stroke Services (COMPASS) Study. We engaged stakeholders as integral research partners by embedding them in study committees and community resource networks that supported local sites. Data stemmed from formal focus groups and continuous participation in working groups. Guided by Grounded Theory, we extracted themes from focus group and meeting notes. These were discussed as a team and with other stakeholder groups for feasibility. A consensus approach was used. Stakeholder input changed many aspects of the study including: the care model that treated stroke as a chronic condition after hospital discharge, training for hospital-based providers who often lacked awareness of the barriers to recovery that patients face, support for caregivers who were essential for stroke patients’ recovery, and for community-based health and social service providers whose services can support recovery yet often go underutilized. Stakeholders brought value to both pragmatic research and health service delivery. Future studies should test the impact of elements of study implementation informed by stakeholders vs those that are not.

The primary aim of this study was to test the causal structure of the model of therapeutic engagement (MTE) for the first time, to examine whether the model assists in understanding the process of patient engagement in cardiac rehabilitation (CR) programs. This study used a prospective design, following up patients from the Gold Coast University Hospital Cardiology ward who attended Robina Cardiac Rehabilitation Clinic. A structural equation model of the interactions among the proposed variables within the three stages of the MTE (intention to engage in CR programs, CR initiation, and sustained engagement) revealed significant relationships among these variables in a dataset of 101 patients who attended a CR program. However, no relationship was discerned between outcome expectancies and patient intention to engage in CR. Patients’ willingness to consider the treatment also mediated the relationship between perceived self-efficacy and patient intention to engage in CR. These findings help clarify the process proposed by Lequerica and Kortte (2010) in the context of patient engagement in CR programs. The findings also reveal information on how patients engage in CR programs. Importantly, this provides new information for healthcare providers, enabling them to more effectively engage patients according to their stage of engagement.

Including information and values from patients in HTA has the potential to improve both the process and outcomes of health technology policy decisions. Accordingly, funding and structural incentives to include patients in HTA activities have increased over the past several years. Unfortunately, these incentives have not yet been accompanied by a corresponding increase in resources, time, or commitment to responsiveness. In this Perspectives piece, we reflect on our collective experiences participating in, conducting, and overseeing patient engagement activities within HTA to highlight the ethical challenges associated with this area of activity. While we remain committed to the idea that patient engagement activities strengthen the findings, relevance, and legitimacy of health technology policy, we are deeply concerned about the potential for these activities to do ethical harm. We use this analysis to call for action to introduce strong protections against ethical violations that may harm patients participating in HTA engagement activities.

Healthcare institutions may often prohibit “cold-calling” or direct contact with a potential research participant when the person initiating contact is unknown to the patient. This policy aims to maintain patient privacy, but may have unintended consequences as a result of physician gatekeeping. In this review, we discuss recruitment policies at the top academic institutions. We propose an ethical framework for evaluating cold-call policies based on three principles of research ethics. In order to maximize engagement of potential research participants, while maintaining patient privacy and autonomy, we then propose several alternative solutions to restrictive cold-call policies, including opt-in or opt-out platforms, a team-based approach, electronic solutions, and best practices for recruitment. As healthcare has evolved with more collaborative, patient-centered, data-driven care, the engagement of potential research participants should similarly evolve.

Introduction: Patient engagement in health decision-making is an important research area within emergency medicine. Studies suggest that patients are often not highly engaged in care decisions, and may not be aware that there are decisions in which they can be involved. This study explored emergency physicians (EPs) perceptions of their patient engagement practices. Methods: As part of a stepped-wedge randomized controlled trial, an introductory seminar was held at 15 emergency department (ED) sites in Alberta. Seminars highlighted physician-patient communication and expectation gaps documented in local studies. As part of the seminar evaluation, EPs were asked to reflect on their engagement of patients in their practice. Descriptive results are reported. Results: A total of 114 EP surveys were returned. The majority of respondents were male (68%) and nearly 40% of respondents have practiced emergency medicine for 5 years or less. Less than half of the EPs (43%) reported always or usually asking their patients about their ED visit care expectations. Approximately one-third (32%) reported always or usually checking their patients’ understanding of management options (e.g., tests, treatments and/or procedures). Patients management preferences were always or usually elicited 24% of the time. Despite limited consistency in ascertaining patients’ preferences, 39% of EPs indicated that they always or usually considered their patients’ preferences when choosing a management plan. Half of the EPs (51%) reported that they always or usually involved their patients in decision-making. Yet, when asked whether other EPs involved their patients in decision-making, only 15% reported that they believed their fellow clinicians did this always or usually. On average, 68% of respondents believed their patients wanted to be completely or mostly involved in their ED and decision-making; however, 16% believed patients were actually completely or mostly involved in the ED care and decision-making. Conclusion: EPs agreed that patients want to be actively involved in their ED care decisions. Yet, their reflection on their own practice, and especially their perception of their colleagues’, highlight large gaps between physicians’ perception of what patients would like and what patients actually receive. Further research should explore these interactions in depth, understand what constrains EPs from involving patients and explore patient perceptions of these interactions.