Patient Advisory Council Research Articles

An alternate level of care plan: Co-designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges.

ObjectiveTo engage with patients, caregivers and care providers to co‐design components of an intervention that aims to improve delayed hospital discharge experiences.DesignThis is a qualitative study, which entailed working groups and co‐design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention.Setting and ParticipantsOur team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7‐member Patient and Caregiver Advisory Council participated in all stages of the research.ResultsKey challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on‐going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on‐going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho‐social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on‐going engagement.Discussion and ConclusionsOur findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.

Abstract C017: The Patient COUNTS Study: Patient Cancer OUtreach, Navigation, Technology, and Support

Abstract Background: While cancer is the most common cause of death for Asian Americans, many Asian American cancer patients do not receive appropriate treatment nor supportive care. The Patient COUNTS project aims to provide these patients and their caregivers with accessible, culturally-relevant, and linguistically-appropriate navigation resources that utilize technology to reduce disparities and improve quality of life. Methods: With feedback from a Patient Advisory Council and focus groups with cancer patients and caregivers, we developed a patient navigation program for Asian Americans that is currently being pilot tested with patients in Northern California. We are also developing an online patient portal that will enable newly diagnosed colorectal, liver, and lung cancer patients to access appropriate resources and virtual navigation. The portal and navigation will be available in English, Chinese (Cantonese/Mandarin), and Vietnamese, with ability to collect patient-generated health data (e.g., quality of life) and provide tailored resources and navigation. Results: We conducted 4 focus groups and 3 individual interviews with 17 participants in 4 languages (English, Mandarin, Cantonese, or Vietnamese). Key emerging themes include: 1) information unawareness or overload; 2) emotional support; 3) navigation needs; and 4) resource access. Participants with limited English proficiency often did not know to ask or what to ask for regarding their diagnosis or treatment. Some, however, were confused and overwhelmed by the amount of information from many sources. Receiving encouragement to fight cancer was described as crucial in their cancer care; family, friends, doctors, nurses or hospital staff were the primary sources of such emotional support. Although most participants were unfamiliar with navigation, they thought it was very desirable once an explanation was provided. Participants wanted information on symptoms and side effects management. They recommended providing information on sensitive topics (e.g., stigma, dying) only when asked by the patient. Access to information in both their native language and English are important for their comprehensive and communication with others. For participants with end-stage disease, information on palliative care and clinical trials should be provided. These findings guided the development of our patient navigation program to provide information on cancer, treatment, living with cancer, emotional well-being, resources (access to health care, financial, transportation, housing, food and nutrition, child/adult care). Conclusions: Our formative research found significant needs among Asian American cancer patients and suggestions for how to address those needs. Implementing the in-person pilot and online portal will enable us to identify key elements of an effective, sustainable, and disseminable navigation program for Asian American cancer patients and their caregivers. Citation Format: Salma Shariff-Marco, Debora Oh, Janice Tsoh, Ching Wong, Laura Allen, Janet Chu, Hoan Bui, Corina Liew, Angela Sun, Joyce Cheng, Lei Chun Fung, Scarlett Lin Gomez, Tung Nguyen. The Patient COUNTS Study: Patient Cancer OUtreach, Navigation, Technology, and Support [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr C017.

The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada.

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils’ governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients’ valuable input to inform health system changes and drive priorities at a policy level.

Pediatric Patient and Family Advisory Councils: A Guide to Their Development and Ongoing Implementation.

Background:Patient and family engagement is increasingly recognized in the care of children with complex health conditions. Through the implementation of Patient and Family Advisory Councils (PFACs), health-care institutions are working to improve patient care by nurturing partnerships among patients/families, managers, and clinicians. Despite the potential for PFACs, empirical research about their implementation remains scarce.Objective:To address this gap, this study explored the recruitment, retention, and implementation strategies used by Canadian PFACs.Design:We used a qualitative descriptive design.Participants:We interviewed 10 spokespersons from Canadian PFACs.Results:We found themes within 2 stages of implementation. The first stage, getting PFACs started, included 4 themes: (1) using evolving recruitment methods, (2) preparing for effective participation, (3) ensuring diversity within PFACs, and (4) preparing terms of reference. The second stage involved strategies to support ongoing PFACs implementation and included 1 overall theme: facilitating optimal PFACs participation. The underlying link between themes was that establishing/maintaining PFACs is an ongoing learning curve.Conclusion:Our findings have the potential to inform new and existing PFACs.

Reducing Readmissions for Heart Failure.

Reducing Readmissions for Heart Failure.

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research

ObjectivesThe overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients...

Lessons Learned from a Systems Approach to Engaging Patients and Families in Patient Safety Transformation

Effective patient- and family-centered care requires a dedication to engaging patients and family members in health system redesign to improve the quality, safety, and experience of care. Provided here are lessons learned six years after establishing an infrastructure of patient and family advisory councils (PFACs) focused on improving health care quality and safety. A large regional health care system with multiple hospitals and ambulatory care delivery sites in the eastern United States adopted a systemwide approach to Patient and Family Advisory Councils on Quality and Safety (PFACQSⓇ) in 2012. This conceptual article describes the barriers and facilitators of adopting, implementing, and sustaining the PFACQS model across a large, geographically diffuse health system. Successful strategies that emerged include active board engagement, co-creation and mentorship by experienced patient advocates to support enhanced engagement by local PFACQS community members, and clear alignment with and line of sight on organizational quality and safety goals. Implementing a robust network of PFACQS focused on improving quality and patient safety requires leadership commitment to transparency, as well as mutual respect and trust. Establishing clear guidelines, structures, and processes supports early adoption. Openness to continuous improvement and adaptations are important to program success and contribute to program sustainability.

An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion.

In 2017, the NYU Clinical and Translational Science Institute's Recruitment and Retention Unit created a Patient Advisory Council for Research (PACR) to provide feedback on clinical trials and health research studies. We collaborated with our clinical research informatics team to generate a random sample of patients, based on the International Classification of Diseases, Tenth Revision codes and demographic factors, for invitation via the patient portal. This approach yielded in a group that was diverse with regard to age, race/ethnicity, sex, and health conditions. This report highlights the benefits and limitations of using an electronic health record-based strategy to identify and recruit members for a PACR.

Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs).

BackgroundDespite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems).ObjectiveTo obtain rich insights about what patients who are not PFAC members expect of PFACs.DesignFrom July to September 2018, we conducted a qualitative study using focus groups.Setting and participantsWe recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council.ApproachUsing grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs.ResultsForty‐two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio‐economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives’ diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems.ConclusionsEliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs’ activities. Attention should be given to improving and measuring patients’ awareness of, and interactions with, their patient representatives.

Patient and Family Advisory Councils for Research: Recruiting and Supporting Members From Diverse and Hard-to-Reach Communities.

To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs). Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem. A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers. Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership. Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

Patients' Views About Patient Engagement and Representation in Healthcare Governance.

Health systems increasingly engage with patient representatives on their governance boards or with patient and family advisory councils to improve care delivery. Little is known about how general patients regard those engagement activities. The objective of this study was to assess the importance of patient representation. We mailed a survey to 31,687 Medicare beneficiaries attributed to a Medicare accountable care organization. We examined relationships between respondents' views and their health characteristics and performed thematic analysis on free-text responses. Among 3,061 respondents, the majority believed that having a patient representative (74.1%) or a patient council (74.0%) mattered "some" or "a lot." The main factors respondents considered in answering were that "patients deserve a voice" (64%) and "having a patient on the [governance] board increases my trust" in this organization (46%). Our analysis of free-text responses illuminated why patient representatives are important, keys to successful engagement, and reasons behind the skepticism. This study indicates that most patients believe representation in health system governance is important, and that realizing its potential requires engagement activities that improve general patients' awareness of, and interaction with, their representatives.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention

ObjectiveTo develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).MethodsFACE-Rare development involved an iterative, family-guided process including...

A Toolkit to Improve Diversity in Patient and Family Advisory Councils: A New Method to Advance Health Equity.

The Institute of Medicine (2001) identifies equity as one of six essential components of health-care quality. However, many health-care organizations lack a formal method to deeply understand and evaluate diverse patient and family experiences. Understanding care experiences of patients and families from minority racial and ethnic groups is essential to improving pervasive health disparities and to making health care more equitable. This article describes the creation of a toolkit aimed at strengthening health-care organizations' abilities to advance health equity through patient and family advisory councils (PFACs). This resource, cocreated with representatives from diverse PFACs, identifies and promotes strategies to recruit and retain diverse representation in advisory councils.

Patient-perceived value of a specialty-specific welcome letter: What you say and how you say it.

Patient experience and clinical outcomes are improved when patients know what to expect. Providing valuable, appropriate information proves challenging considering variation in patient education, literacy, and limitations specific to patients with neurologic disease. Scaffolding of what to expect, care team members, needed materials, procedures, directions to facilities, and methods of communication are core aspects of improving patient readiness. This study employed standard quality improvement methods. An existing (original) patient welcome letter was first analyzed to assess its literacy levels. Surveys were then administered to patients with neurologic disease assessing perception of readiness for ambulatory appointments and the overall value of the welcome letter. In addition to Likert-type scales, patients also provided open feedback on what should be included in the letter. A revised letter was then created with added content, improving literacy levels. The letter was further assessed through clinical and nonclinical groups including our neuromedicine Patient and Family Advisory Council. Response data were analyzed comparing the original vs the revised score using a t test assuming equal variances. The "overall value" score of the original welcome letter (3.79 of 5.0) improved to the revised score (4.63 of 5.0). Patients perceived the revised welcome letter as improving their readiness significantly as ambulatory patients with neurologic disease. Preparing patients for their neurology visits is important and affects visits' value. Sensitivity to literacy levels is an essential component of person-centered care among neurologic patients. Carefully created and assessed welcome letters help to achieve these goals by improving readiness for outpatient appointments and increases perceived overall value significantly.

Meaningful Partnerships: Stages of Development of a Patient and Family Advisory Council at a Family Medicine Residency Clinic.

BackgroundPartnering with patients and families is a crucial step in optimizing health. A patient and family advisory council (PFAC) is a group of patients and family members working together collaboratively with providers and staff to improve health care.ObjectiveThis study aimed to describe the creation of a PFAC within a family medicine residency clinic. To understand the successful development of a PFAC, challenges, potential barriers, and positive outcomes of a meaningful partnership will be reported.MethodsThe stages of PFAC development include leadership team formation and initial training, PFAC member recruitment, and meeting launch. Following a description of each stage, outcomes are outlined and lessons learned are discussed. PFAC members completed an open-ended survey and participated in a focus group interview at the completion of the first year. Interviewees provided feedback regarding (1) favorite aspects or experiences, (2) PFAC impact on a family medicine clinic, and (3) future projects to improve care. Common themes will be presented.ResultsThe composition of the PFAC consisted of 18 advisors, including 8 patient and family advisors, 4 staff advisors, 4 resident physician advisors, and 2 faculty physician advisors. The average meeting attendance was 12 members over 11 meetings in the span of the first year. A total of 13 out of 13 (100%) surveyed participants were satisfied with their experience serving on the PFAC.ConclusionsPFACs provide a platform for patient engagement and an opportunity to drive home key concepts around collaboration within a residency training program. A framework for the creation of a PFAC, along with lessons learned, can be utilized to advise other residency programs in developing and evaluating meaningful PFACs.

Reducing Medication Errors in Home Hospice to Improve Patient Safety (QI714)

1.Reduce medication errors in the home hospice setting by focusing on performance improvement efforts in nurse practice and patient/caregiver practice.2.Develop patient- and family-centered educational tools for safe medication practices in a home hospice setting. Gilchrist Hospice Care’s average daily census is 433 in the home care setting, representing 49% of the total served. In FY15, our medication error rate was 0.61, with 55% in home care. A Medication Safety Team uncovered root causes and focused efforts on nurse centered medication reconciliation practices and patient/caregiver education. To reduce medication errors in home hospice service by 20% by FY18. The Medication Safety Team includes our home care Medical Director, Clinical Nurse Specialist, and nurses from home care, triage, admissions, and after-hours teams. Using the IHI model, the team developed new educational tools for medication safety: Syringe Tool, Medication Record, PRN Medication Tracker. Feedback about the ease of use during a crisis to prevent medication errors was collected from patients, family caregivers, and clinicians. The Patient and Family Advisory Council consulted on the visual representation of the tools. A double check process was initiated in the new First Dose Protocol, providing families 24/7 access to our nurse help line. Our Medical Director trained nurses in polypharmacy, to improve crucial conversations about reducing the number of medications taken. The nurses and family members surveyed reported over 90% satisfaction with use of new education tools. The FY18 medication error rate is 0.34, representing a 44% decline over a three-year period. The errors in home care decreased 9% during the same period. The new tools are integrated into the hospice Caregiver Handbook and provide cues about when to administer medications, how to safely check dosing, and provide clinicians a clear picture of medication usage between visits. The double check process in triage has led to countless ‘great catches’. These simple improvements to nurse practice and patient education have made a lasting impact at the frontline of care to improve patient safety and overall caregiver confidence.

Reducing the impact of distance on hematopoietic cell therapy patients.

74 Background: Hematopoietic Cell Therapy (HCT) patients experience unique travel challenges and high out-of-pocket costs due to the highly specialized care required. We conducted a mixed methods study to understand current patient support programs in Ontario and other jurisdictions and a cost analysis to inform the development of recommendations to reduce the impact of remoteness on HCT patients and caregivers. Methods: Qualitative information on patient transportation and accommodation supports was gathered through informal and structured input from fourteen Ontario Regional Cancer Program Directors, Hematologists, Patient and Family Advisory Council and Aboriginal Navigators. An environmental scan of medical travel assistance programs within Ontario and in other jurisdictions was performed. A scoping literature review was conducted of published studies focused on inequities in receipt of cancer care in countries with Universal Health care. HCT patient travel patterns to each of the transplant facilities in Ontario were obtained from analysis of Cancer Care Ontario data holdings. Results: We concluded that travel assistance for cancer patients in Ontario varies considerably across the province, and that Ontario lags behind other jurisdictions in Canada and internationally. The scoping literature review revealed that patients who live far from specialist centres, for some diseases, have later stage at diagnosis, less timely access to specialist care, poorer outcomes, lower patient experience scores, and make treatment decisions based on distance. From the analysis of travel patterns for HCT patients, provincially 4 – 79% of patients travel for HCT based on their location (see table below). Conclusions: This study highlights the need to better support HCT patients in Ontario. As a result, a proposal to support accommodations for HCT patients was developed and approved by the Ontario government for implementation in 2018/19.[Table: see text]

Communication lapses and navigation needs for non-English-speaking patients: An MSK Patient and Family Advisory Council and Immigrant Health and Cancer Disparities initiative.

178 Background: In 2017, 5,939 outpatients (5%) and 1,065 inpatients (9%) treated at MSK were non-English-speaking. Given the new and varying treatment paradigms combined with the need to consider clinical trial enrollment, there are increasingly complex communication needs. We sought to address the needs of this vulnerable patient population. Methods: Patient Family Advisory Council in collaboration with the Immigrant Health & Cancer Disparities Service conducted focus groups to determine needs of non-English speaking patients treated at MSKCC. Mass emails were sent out to the MSK attendings and nurses to recommend appropriate patients to participate. A coordinator called all those patients and invited them to the focus groups. A trained bilingual moderator led each 120-minute group discussion using an interview guide. Results: Three focus groups were conducted : 2 in Spanish and 1 in Russian. Questions related to communication, patient experience and support services were asked to the patient volunteers. In total, 10 patients and 4 caregivers participated. Across all 3 focus groups, three major themes emerged: (1) inadequate communication, participants brought up examples of communication breakdowns (2) access to resources and information, participants expressed that there was a substantial need for accessible, competent, and social support/navigation services and (3) MSK patient experience, participants discussed interactions with doctors, nurses, and staff. Conclusions: Non-English-speaking patients and family members not only deal have to deal with the fear of a cancer diagnosis but also lack the ability to comfortably communicate their concerns. Programs to empower patients and their families to ask for help and advocate for themselves are desperately needed. Additionally, navigation services are needed to provide assistance in making the appropriate linkages for the services required. This qualitative research at MSK is ongoing.

Implementation of Patient and Family Advisory Councils in Primary Care Practices in a Large, Integrated Health System.

Implementation of Patient and Family Advisory Councils in Primary Care Practices in a Large, Integrated Health System.

How Is Family Medicine Engaging Patients at the Practice-Level?: A National Sample of Family Physicians.

Emerging policy consensus advocates that patient-centered care should include an active, practice-level patient role, but it is unknown how commonly these roles are implemented. We sought to understand current prevalence and predictors of practice-level patient engagement in US primary care settings. We assessed practice-level patient engagement by using 2016 American Board of Family Medicine Certification Examination registration data, restricted to ambulatory primary care site respondents randomly selected for a patient-centered medical home (PCMH) question module. Multivariate logistic regression models identified predictors of high-intensity patient engagement, defined as a patient advisory council or patient volunteers in quality improvement activities. A total of 6900 examinees reported practicing in primary care sites; 1368 randomly received PCMH questions. Practice-level patient engagement included patient surveys (76.5%; 95% CI, 74.3-78.8%), patient suggestion boxes (52.9%; 95% CI, 50.2-55.5%), patient board of director memberships (18.8%; 95% CI, 16.7-20.9%), patient advisory councils (23.8%; 95% CI, 21.5-26.0%), and patient participation in quality improvement (20.5%; 95% CI, 18.3-22.6%). High-intensity patient engagement was reported by 31.1% (95% CI, 28.7-33.6%); predictors included large practice size (OR, 3.30; 95% CI, 1.96-5.57), serving more vulnerable patient populations, (OR, 1.83; 95% CI, 1.18-2.84) and PCMH certification (OR, 2.19; 95% CI, 1.62-2.97). Nearly one-third of physicians reported working in settings with high-intensity practice-level patient engagement. An implementation science approach should examine why high-intensity activities are more common in some practice settings and whether these activities add value through improved patient experience and health outcomes.