Patient Advisory Committee Research Articles

Facilitated telemedicine for hepatitis C virus: Addressing challenges for improving health and life for people with opioid use disorder.

People who use drugs (PWUD) frequently delay or avoid obtaining medical care in traditional healthcare settings. Through a randomized controlled trial, we investigated facilitated telemedicine for hepatitis C virus (HCV) integrated into opioid treatment programmes. We sought to understand the experiences and meanings of facilitated telemedicine and an HCV cure among PWUD. We utilized purposive sampling to interview 25 participants, 6-40 months after achieving an HCV cure. We interpreted and explicated common meanings of participants' experiences of an HCV cure obtained through facilitated telemedicine. Participants embraced facilitated telemedicine integrated into opioid treatment programmes as patient-centred care delivered in 'safe spaces' (Theme 1). Participants elucidated their experiences of substance use and HCV while committing to treatment for both entities. Facilitated telemedicine integrated into opioid treatment programmes enabled participants to avoid stigma encountered in conventional healthcare settings (Theme 2). Participants conveyed facing negative perceptions of HCV and substance use disorder. Improved self-awareness, acquired through HCV and substance use treatment, enabled participants to develop strategies to address shame and stigma (Theme 3). An HCV cure, considered by PWUD as a victory over a lethal infectious disease, promotes self-confidence, enabling participants to improve their health and lives (Theme 4). Integrating facilitated telemedicine into opioid treatment programmes addresses several healthcare barriers for PWUD. Similarly, obtaining an HCV cure increases their self-confidence, permissive to positive lifestyle changes and mitigating the negative consequences of substance use. In this study of patient involvement, we interviewed patient-participants to understand the meaning of an HCV cure through facilitated telemedicine. Participants from a facilitated telemedicine pilot study provided essential input on the design and outcomes of a randomized controlled trial. Pilot study participants endorsed facilitated telemedicine in a testimonial video. They attended site initiation meetings to guide trial implementation. A Patient Advisory Committee (PAC) ensured that patient participants were active members of the research team.The PAC represented patients' voices through feedback on study procedures. ASustainability Committee supported public involvement in the research process, including educational opportunities, feedback on implementation, and future sustainability considerations.

Patient complaints about communication in cancer care settings: Hidden between the lines

ObjectivesTo investigate patient complaints in cancer care settings reported to patient advisory committees (PACs) and describe the frequency and content of communication failures across all reports. MethodsContent analysis, with a summative approach, was applied to cancer care complaints (2016–2020) by 692 patients to PACs in one Swedish healthcare region. ResultsMore than half the patients reported communication failures. Patients reported not receiving proper information, not being listened to, and being treated disrespectfully or impersonally. Communication failures occurred in different stages of the patients’ cancer care, from diagnostic workup to end-of-life. Compared with the results of the PACs, communication failures were underreported, and were often combined with complaints in other categories. ConclusionsCommunication failures are hidden “between the lines” and do not appear clearly in existing reporting systems. Healthcare must utilize the knowledge conveyed by patient complaints and create conditions and environments that support healthcare providers in delivering person-centered care. Practice ImplicationA summary picture of patients’ complaints in Swedish cancer care is provided. These results could be used to further improve the patient complaint system. Above all, the results could serve as a “wake-up call” about the importance of communication and a valuable resource in improving cancer care.

Patient Engagement in Health Research: Perspectives from Patient Participants.

Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves. A qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses. Our reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement. Engaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement.

Defining patient-centered research priorities in pediatric dermatology.

Patient and caregiver perspectives are critical in understanding dermatologic disease impact, presentation, and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC), a group of patient representatives and parents of children with cutaneous disease, pursued a multistep, iterative, consensus-building process to identify comprehensive, high-priority research needs. Building on discussions at the 2020 PeDRA Annual Conference, a research prioritization survey was developed and completed by PtAC members. Survey themes were aggregated and workshopped by the PtAC through a series of facilitated calls. Emerging priorities were refined in collaboration with additional PeDRA patient community members at the 2021 PeDRA Annual Conference. Subsequently, a final actionable list was agreed upon. Fourteen PtAC members (86.7% female) representing patients with alopecia areata, atopic dermatitis, vascular birthmarks, congenital melanocytic nevi, ectodermal dysplasias, epidermolysis bullosa, Gorlin syndrome, hidradenitis suppurativa, ichthyosis, pemphigus, psoriasis, Sturge-Weber syndrome, and pachyonychia congenita completed the survey. Following serial PtAC meetings, 60 research needs were identified from five domains: psychosocial challenges, health care navigation/disease management, causes/triggers, treatments to preserve or save life, and treatments to preserve or save quality of life. Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient-centric initiatives and investigations.

Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts.

Introduction The Cancer Health Assessments Reaching Many study seeks to reduce disparities in genomic care. Two patient advisory committees (PACs) were formed, 1 of English speakers and 1 of Spanish speakers, to vet study processes and materials. Stakeholder engagement in research is relatively new, and we know little about how stakeholders view their engagement. We wanted to learn how patient stakeholders viewed the process, to inform future patient engagement efforts. Methods Patients at 2 study sites were invited to serve on 2 PACs. We used an iterative engagement process to solicit and incorporate patient feedback. Much of the PAC feedback on study materials and processes was incorporated. Using surveys and exit interviews, we evaluated stakeholders' experiences as PAC members. Results Nearly all PAC members felt satisfied and included in the study decisions, but surveys and exit interviews suggested the need to improve communications. Discussion Although most believed their feedback was used, and most felt included in study decisions, some said they did not know whether their opinions were used to modify materials or approaches. This suggests the need to explain to patient stakeholders the extent to which their feedback was used and to inform them about the impact that other stakeholders, such as institutional review boards, have on decisions. Conclusion Our evaluation highlights the value of dedicating resources to stakeholder engagement. Although gathering patient feedback on study materials and processes introduced time constraints and complexity to our study, adaptations to materials and processes furthered study goals.

Patient Advisory Committee for a Chronic Opioid Therapy Risk Reduction Evaluation: Engaging Diverse Patients.

Active patient engagement in research is critically important, but can be difficult in controversial areas where patients have conflicting perspectives. In this Lesson's Learned report, we describe engagement of patients with divergent views in guiding a controlled interrupted time series evaluation of chronic opioid therapy risk reduction initiatives implemented by a large health plan. A nine-person Patient Advisory Committee (PAC) advised the scientific team on the evaluation and reporting of results on diverse outcomes important to patients, including pain and function, opioid use disorder, overdose, motor vehicle accidents, and medically attended injuries. Patients were selected with varied perspectives on opioid prescribing for chronic pain. Multiple strategies facilitated PAC engagement: making room for personal experience; investing upfront in setting the stage for working together including an initial face to face meeting; clarifying shared values; and including individuals skilled in group process and collaboration. PAC meetings were organized separately from regular meetings of the scientific team. Shared values identified to guide the research were: Safety, respect, autonomy, compassion, knowledge and teamwork. PAC guidance altered key scientific decisions regarding assessment of patient outcomes, doctor-patient collaboration, and analytic approaches. Separate meetings of the PAC and scientific team enhanced opportunities for patients to influence the study design, analyses and interpretation of evaluation results. Convening a large group of patients with diverse perspectives and experiences was productive and influential in guiding the evaluation. Patient selection and building rapport allowed PAC members with divergent perspectives to work together effectively.

Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods. We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer. In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project's participatory approach and identify barriers to participation. Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project. Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers' capacity to engage meaningfully with stakeholders.