Patient Advisory Council Research Articles

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients. This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness. The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders. We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget. A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application. ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.

Data-driven insights to increase utilization of an oncology acute care clinic.

342 Background: Cancer patients often use the emergency department (ED) for acute symptoms. Because of the frequency of non-emergent acute care, many practices have created non-ED sites of care, such as Oncology Acute Care (OAC). OAC clinics can manage urgent conditions, and have been shown to reduce ED visits, however, patient and practice factors may lead to underuse of these clinics. We aimed to increase OAC utilization at our safety-net system. Methods: Parkland Health is the safety-net system for Dallas County, caring for a primarily uninsured (70.0% Medicaid/charity care), minority population (60.4% Hispanic, 24.2% Black). We established an OAC in 2017: patients can call a dedicated triage line staffed by English and Spanish-speaking nurses, who schedule OAC visits as appropriate. Subsequent quantitative and qualitative research found that OAC was underused, but that many patients were simply unaware of the OAC. In early 2023, a monthly 20-member multidisciplinary workgroup was formed, including many frontline staff. Findings and ideas for improvement were reviewed with our Patient and Family Advisory Council. Implementation strategies were aimed at raising staff/provider awareness, streamlining patient education, and developing relevant process measures. Results: By Q1 2024, nurse call volume rose to 235, from 110 calls in Q3 of 2023. Patients began to call sooner upon symptom onset (50% of symptoms were more than 3 days old, compared to 55%); 51% were scheduled to the OAC on the same day. Nurses managed 34% of calls through telehealth. Lack of OAC availability resulted in ED referral for 4% of calls. There was an early downward trend in potentially avoidable ED visits (15% of chemotherapy infusions with an ED visit in 30 days in Q4 2023, down to 12.5% in Q1 2024). Conclusions: A data-driven, delivery research collaboration has been established to reduce avoidable ED care among adults receiving chemotherapy. This collaborative has been marshalling existing resources to serve a patient population that faces many challenges in optimizing their care. By piloting these implementation strategies, we are improving patient symptom management, and have created a platform for ongoing delivery innovation.

Hospital Diversity, Equity, and Inclusion Efforts: Perspectives of Patient and Family Advisors.

Patient and family advisory councils are common within children's hospitals. However, lack of diversity among patient and family advisors (PFAs) may result in exclusion of crucial perspectives and perpetuate inequities. We sought to understand PFA perspectives on how children's hospitals should approach: (1) recruitment and support of PFAs from groups at greater risk of health inequities; and (2) development of meaningful partnerships with PFAs or patient and family advisory councils on institutional diversity, equity, and inclusion (DEI) efforts. We conducted a qualitative study of PFAs of children's hospitals from communities at greater risk for health inequities based on self-identified race, ethnicity, gender, socioeconomic status, disability, language, or other factors. Focus groups were virtual and group discussions were recorded, transcribed, and analyzed using inductive qualitative analysis. In total, 17 PFAs participated across 5 focus groups (4 in English, 1 in Spanish). We identified 6 themes: (1) PFA diversity is necessary to understand existing health inequities; (2) diversity needs to be considered broadly; (3) recruiting for diverse PFAs requires intentionality, visibility of PFACs within and outside of the hospital, and deliberate connections with families and communities; (4) efforts to increase PFAC diversity must be accompanied by work to develop inclusive environments; (5) diversity efforts require meaningful engagement and equity; and (6) diverse PFACs can enrich DEI efforts but require organizational commitment and follow-through. Insights from our qualitative study of PFAs can be used by healthcare systems to foster diversity and inclusion in PFACs and advance hospital DEI efforts.

Exploring long-term cancer survivors’ care experiences and unmet needs: protocol for a qualitative study

BackgroundThe number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals.MethodsTo investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons.DiscussionThe qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.

Identifying and Measuring Administrative Harms Experienced by Hospitalists and Administrative Leaders

Administrative harm (AH), defined as the adverse consequences of administrative decisions within health care that impact work structure, processes, and programs, is pervasive in medicine, yet poorly understood and described. To explore common AHs experienced by hospitalist clinicians and administrative leaders, understand the challenges that exist in identifying and measuring AH, and identify potential approaches to mitigate AH. A qualitative study using a mixed-methods approach with a 12-question survey and semistructured virtual focus groups was held on June 13 and August 11, 2023. Rapid qualitative methods including templated summaries and matrix analysis were applied. The participants included 2 consortiums comprising hospitalist clinicians, researchers, administrative leaders, and members of a patient and family advisory council. Quantitative data from the survey on specific aspects of experiences related to AH were collected. Focus groups were conducted using a semistructured focus group guide. Themes and subthemes were identified. Forty-one individuals from 32 different organizations participated in the focus groups, with 32 participants (78%) responding to a brief survey. Survey participants included physicians (91%), administrative professionals (6%), an advanced practice clinician (3%), and those in leadership roles (44%), with participants able to select more than one role. Only 6% of participants were familiar with the term administrative harm to a great extent, 100% felt that collaboration between administrators and clinicians is crucial for reducing AH, and 81% had personally participated in a decision that led to AH to some degree. Three main themes were identified: (1) AH is pervasive and comes from all levels of leadership, and the phenomenon was felt to be widespread and arose from multiple sources within health care systems; (2) organizations lack mechanisms for identification, measurement, and feedback, and these challenges stem from a lack of psychological safety, workplace cultures, and ambiguity in who owns a decision; and (3) organizational pressures were recognized as contributors to AHs. Many ideas were proposed as solutions. The findings of this study suggest that AH is widespread with wide-reaching impact, yet organizations do not have mechanisms to identify or address it.

Near real-time patient experience feedback with data relay to providers: a systematic review of its effectiveness.

Near Real-Time Feedback (NRTF) on the patient's experience with care, coupled with data relay to providers, can inform quality-of-care improvements, including at the point of care. The objective is to systematically review contemporary literature on the impact of the use of NRTF and data relay to providers on standardized patient experience measures. Six scientific databases and five specialty journals were searched supplemented by snowballing search strategies, according to the registered study protocol. Eligibility included studies in English (2015-2023) assessing the impact of NRTF and data relay on standardized patient-reported experience measures as a primary outcome. Eligibility and quality appraisals were performed by two independent reviewers. An expert former patient (Patient and Family Advisory Council and communication sciences background) helped interpret the results. Eight papers met review eligibility criteria, including three randomized controlled trials (RCTs) and one non-randomized study. Three of these studies involved in-person NRTF prior to data relay (patient-level data for immediate corrective action or aggregated and peer-compared) and led to significantly better results in all or some of the experience measures. In turn, a kiosk-based NRTF achieved no better experience results. The remaining studies were pre-post designs with mixed or neutral results and greater risks of bias. In-person NRTF on the patient experience followed by rapid data relay to their providers, either patient-level or provider-level as peer-compared, can improve the patient experience of care. Reviewed kiosk-based or self-reported approaches combined with data relay were not effective. Further research should determine which approach (e.g. who conducts the in-person NRTF) will provide better, more efficient improvements and under which circumstances.

Establishing a Research-Related Patient and Family Advisory Council for a Surgical Specialty

Engaging patients and family members in formal feedback for health care processes can be impactful, especially when cultivating new care and research protocols. However, most surgical groups lack established systems for enlisting these critical stakeholders. This is a descriptive report of how we built our Patient and Family Advisory Council (PFAC) through a multistep process with patients, providers, research staff, and administrators. We also detail how it has advanced research, care, and mutually beneficial collaboration at our hand center. For example, our PFAC has provided vital input on multiple grant submissions, assisted with the development of a web-based digital application for thumb arthritis therapy, and improved our patient care approaches. To successfully create and sustain a PFAC, there must be commitment from multiple stakeholders across clinical, research, administration, and leadership spectra. Through this alliance, all stakeholders can develop better care and investigative strategies.

Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals

This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.

Engaging healthcare professionals and patient representatives in the development of a quality model for hospitals: a mixed-method study.

Top-down and externally imposed quality requirements can lead to improvement but do not seem as sustainable as intended. There is a need for a quality model that intrinsically motivates healthcare professionals to contribute to quality and safe care in hospitals. This study shows how a quality model that matches the identity and the quality vision of the organization was developed. A multimethod design with three phases was used in the development of the model at a large teaching hospital in Belgium. In the first phase, 14 focus groups and 19 interviews with staff members were conducted to obtain an overview of the quality and safety challenges, complemented by a plenary discussion with the members of the patient advisory council. In the second phase, the challenges that had been captured were further assessed using a hospital-wide survey for all hospital staff. Finally, a newly established quality review board (with internal and external stakeholders) critically evaluated the input of Phases 1 and 2 and defined the basic quality standards to be implemented in the hospital. A first evaluation 2 years after the implementation was conducted based on (i) patients' perceptions of quality of care and patient safety by publicly available indicators collected in 2016, 2019, and 2022 and (ii) staff experiences and perceptions regarding the acceptability of the new model gathered through (grouped) interviews and an open questionnaire. The quality model consists of eight broad themes, including norms for the hospital staff (n = 27), sustained with quality systems (n = 8), and organizational support (n = 6), with aid from adequate management and leadership (n = 6). The themes were converted into 46 standards. These should be supported within a safe, efficient, and caring work environment. The new model was launched in the hospital in June 2021. The evaluation shows a significant difference in quality and safety on different dimensions as perceived by hospitalized patients. The perceived added value of the participatory model is a better fit with the needs of employees and the fact that the model can be adjusted to the specific context of the different hospital departments. The lack of hard indicators is seen as a challenge in monitoring quality and safety. The participation of various stakeholders inside and outside the organization in defining the quality challenges resulted in the creation of a participatory quality model for the hospital, which leads towards a better-supported quality policy in the hospital.

Pandemic Patient Engagement Success: Maintaining Family Presence Through Partnership

This presentation is relevant for patients of hospitals and residents of long-term care facilities, their loved ones and essential partners in care, and staff and leadership of healthcare facilities.
 A painful pandemic challenge for patients, families and staff in hospitals was the absence of loved ones or essential care partners through Family Presence/Visitor Policy restrictions. Leadership at Kingston Health Sciences Centre (KHSC) worked proactively with the Patient and Family Advisory Council and a small, diverse group of Patient Experience Advisors to plan for possible restrictions and consider how best to approach ongoing changes and challenges to the policy expected in the face of the pandemic. The group continues to work together at this time of uncertainty.
 An initial meeting of eight advisors and leaders took place prior to the World Health Organization’s official announcement of the pandemic. Due to growing concern about hospital infections, the meeting venue was a local coffee shop, hence the group became known throughout the hospital as The Balzac’s Group. Synchronous virtual meetings and asynchronous communication were employed by the group to address concerns and create family presence opportunities on a rapid response basis. Group collaboration remains evident as new concerns arise with the ongoing ebb and flow of COVID-19 hospitalizations, staff shortages and less restrictive family presence policies. This partnership has been pivotal to the organization’s pandemic planning and response, enabling family presence while respecting government directives, organizational challenges, and patient/family priorities.
 This collaboration informed several new and sustained initiatives including: a virtual visits process, ePostcards, a Care Partner Program, expanded cell phone use in restricted areas, resources for loved ones traveling distances, careful and measured increases in family presence and a family presence policy Exceptions Committee.
 An unexpected outcome was an increased level of respect and strengthened patient engagement. Factors influencing this success were transparency and trust in sharing sensitive or confidential information, mutual decision-making, frank and honest sharing of both personal and professional perspectives, and active listening. Many KHSC advisors increased their patient partnership activities during the pandemic and felt an enhanced sense of agency in their efforts to improve the patient experience in healthcare.
 
 This initiative may be a source of new ideas, inspiration, and encouragement for patient partners and hospital leaders to actively partner in co-design and delivery of compassionate person-centred policies and care, especially during times of crisis.
 The group continues to be the “go-to” group for family presence policy questions. The strengthened relationship with Patient Advisors has had a spillover effect more broadly into other hospital initiatives and increased awareness of the value of their input. We hope to continue to share this success story broadly to encourage other healthcare facilities to partner with the precious resource of patients, families, and patient advisors, at all levels of health care. We are considering a Patient Advisor led publication in the future.

It Takes a Village: Coordinating and Streamlining Access to Palliative Care Resources through a Centralized Referral and Contact

Introduction/Background: The Couchiching Ontario Health Team (COHT) is a first-round health team in rural Ontario, Canada, designed as part the Provincial Government’s new model of health care delivery that puts patients, families and caregivers at the center of the health care system. The COHT members include Family Health Teams, primary care physicians, home care support services, an acute care hospital, Indigenous healing providers, community housing support services, a fulsome Patient and Family Advisory Council and many others. As part of the year-one priority population strategy, improving resource allocation and multi-provider care delivery for Palliative Patients was identified as of utmost importance. 
 The COHT Palliative Care Network identified multiple doors of resource access, multiple referrals and a variety of disparate services available, but not formally connected, for one of the most vulnerable populations. We heard from patients, families and caregivers that they were confused about who to contact first, specifically those without a Primary Care Provider, and would often turn to acute care services as a result.
 Engagement – Shared Values and Vision: The Palliative Care Network Working Group brought together a fulsome compliment of multi-sectoral, interdisciplinary team members, on a monthly basis, to work towards a common goal; ensuring one-door access to all palliative care services within the Couchiching area.
 After a gap analysis identified not only gaps in the system, but also instances where work was being duplicated (from a lack of shared care plans and standardized communication), the group started to focus on identifying the needs for the palliative population, and their caregivers to access a fulsome resource complement, geared to every stage of their care journey, by ensuring no door would be the wrong door.
 This led to the creation of One-number and One-referral accessed by Primary Care, Nurse Practitioners, Nurses and even community members themselves, for the purpose of accessing and navigating necessary services. By completing one referral form and answering a few simple questions a patient or their caregiver can be directed to Nursing Services for symptom relief or end of life goals, Hospice to inquire about a bed, Social Work for grief and bereavement services, volunteer or faith groups and even connected with Primary Care.
 System Wide Governance and Leadership: By assigning governance through shared accountability agreements, to a multi-organizational OHT, each group member feels responsible for the outcomes of the population as a whole, providing a team-based approach to care delivery. While still working within the constraints of traditional funding principles, organizations are dividing up work, and creatively finding ways to ensure care is provided to patients in their preferred setting, which is often their own home. With human health resource scarcity, and burnout at the forefront of healthcare, the centralized referral’s ability to triage patients with the greatest needs, and share that responsibility with other Working Group members has been incredibly impactful and has allowed for the navigation, and coordination of integrated services to be seamlessly delivered by a varied group of providers to offer wraparound care for the most vulnerable population.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol

BackgroundCancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent.MethodsThis is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants’ experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community.DiscussionThis study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Nothing About Patients Without Patients: More Than Just a Catchphrase!

Health care is sometimes called a "team sport," yet patients were traditionally not considered to be "on the team" in medicine. In 2001, the Institute of Medicine (now National Academy of Medicine) published its seminal book Crossing the Quality Chasm, in which patient-centered care was identified as 1 of 6 quality aims. Many organizations have since included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. In the past 10 years, the focus on patient-centered care has expanded in the Kaiser Permanente, Southern California region to include innovative ways for patients to collaborate with health care teams to codesign improvement efforts that are truly patient-centered. We will describe 3 important approaches that have greatly increased the patient-centeredness of our organization: individual patient approaches; adding patients onto health care teams; and effectively utilizing patient and family advisory councils. We will provide examples of how all health care organizations can better partner with their patients to improve their ability to provide higher quality, safer, more equitable, and affordable health care. The slogan "Nothing About Patients Without Patients" was an early rallying cry of the patient engagement movement. It conveyed the idea that as with everything else in our society, patients now expect to have a say in the design and implementation of their care. We show that this is not only possible, but also highly effective and even necessary to improving care.

Multi-staged development and pilot testing of a self-assessment tool for organizational health literacy

BackgroundUntil now a comprehensive, consensus-based tool that can be used by a variety of health care organizations for assessing their organizational health literacy (OHL) is not available. Therefore, we aimed to develop and test a literature- and consensus-based self-assessment tool.MethodsThe study is based on a scoping review that was previously published by the authors. For the development of the self-assessment tool, the criteria identified in the literature were synthesized with criteria gained through group discussions with representatives of different types of health care organizations (N = 27) all based in Hamburg (Germany). Consensus on the criteria was reached by conducting a Delphi process (N = 22). A review by the project’s patient advisory council was included in the process. The self-assessment tool was converted into an online tool and refined by a pretest. Finally, the online survey was piloted (N = 53) and the reliability and item loadings for each scale were analyzed.ResultsIn total, 77 criteria (items) characterizing a health literate health care organization were developed and grouped into five main categories (scales): (1) “easy access and navigation”, (2) “integration, prioritization, and dissemination of OHL”, (3) “qualification, quality management, evaluation, and needs assessment”, (4) “communication with target groups”, and (5) “involvement and support of target groups”. The results of the online survey showed that the tool is suitable for assessing an organization’s status quo on OHL. The psychometric analysis showed good to excellent internal consistency. Item analyses of the developed self-assessment tool was satisfactory.ConclusionsWe were able to define a set of 77 items to characterize OHL, which were integrated into a new, comprehensive, and consensus-based self-assessment tool to identify areas for improvement. We found evidence that the self-assessment tool, based on the identified criteria, consists of the assumed five scales. Further research should analyze the validity of the self-assessment tool on a higher detail level.

Abstract A011: Evaluation of a theory-informed video intervention to educate underrepresented groups on clinical and genomic research using the Theoretical Framework of Acceptability

Abstract Introduction: Emerging evidence supports the potential effectiveness of technologically based interventions to disseminate health information to underserved populations. Considering the multifactorial barriers to clinical trial and genomic testing participation especially for African Americans (AA), who have been shown to make up less than 10% of all cancer clinical trial participants, a video was developed to inform minority populations on the importance of diversity in clinical trials and genomic research. To confirm that the video was deemed acceptable by the target audience, a quantitative assessment was conducted. Methods: We utilized the Theoretical Framework of Acceptability to create a survey aimed at assessing the animated video. Participants viewed the video and were asked to fill out the survey. Thirty-seven surveys were completed which included members of a patient advisory council at a local hospital (n=6) and graduate students from a medical school (n=29). Results: Responses were recorded on a five-point Likert scale ranging from 1 (Strongly Disagree) to 5 (Strongly Agree). Participants agreed that they enjoyed viewing the illustrations in the video (𝑋̅=4.32, s=0.97) and listening to the audio (𝑋̅=4.22, s=1.03). After watching the video, participants reported that it educated them on what a “genome” is (𝑋̅=4.16, s=0.83), as well as the benefits of participating in a clinical trial (𝑋̅=4.62, s=0.49) and donating biospecimens (𝑋̅=4.14, s=0.95). Participants moderately agreed that the video informed them on the disadvantages of participation in a clinical trial (𝑋̅=3.38 s=1.36) and biospecimen donation (𝑋̅=3.70, s=1.10). Participants reported feeling confident in making well-informed decisions about participating in clinical trials (𝑋̅=4.27, s=0.69) or donating biospecimens after watching the video (𝑋̅=4.24, s=0.80). However, after watching the video participants reported being somewhat unclear on how to sign up for a clinical trial (𝑋̅=3.57, s=1.21) and how to donate biospecimens (𝑋̅=3.43, s=1.21). Overall, the video was inclusive of the participants’ beliefs and values (𝑋̅=4.24, s=0.76) and attitudes towards the video were favorable with a mean score of 4.4 (s=0.62) on a scale from 1 (Completely Unacceptable) to 5 (Completely Acceptable). Discussion: The feedback received through the TFA adapted questionnaire will be utilized to improve the content of the video. Health communication methods should consider creating technologically based interventions that are deemed acceptable by target populations, in order to engage with and educate underrepresented populations. Citation Format: Victoria Churchill, Jamirah Y. Chevrin, Roland Matthews, Brian Rivers. Evaluation of a theory-informed video intervention to educate underrepresented groups on clinical and genomic research using the Theoretical Framework of Acceptability [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A011.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations.

Inclusiveness, Support, Mutual Respectand Co-Build are the four pillars of patient engagement according to the Strategy for Patient-Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re-Purposing the Ordering of Routine laboratory Tests (RePORT)'. Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co-chairs of the PAC. Patient research partners were offered training, supportand tailored modalities of compensation to actively engage with the PAC. Regular member check-ins occurred through reflexivity and a formal evaluation of PAC member engagement. The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course-changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co-chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co-design approaches yielded rich research outputs. Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co-Build for meaningful patient engagement. Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co-development of a patient engagement strategy using a Human-Centered Design process.

Hospitalists' Perspective of Inpatient Care for Patients with Sickle Cell Disease and Areas for Improvement

Background Acute painful vasoocclusive episodes (VOEs) are the most common reason for hospitalization for adults with sickle cell disease (SCD) and significant predictors of mortality. The facilitators and barriers to providing quality care for adults with SCD in the inpatient setting are largely unknown. We aimed to explore inpatient SCD delivery models in the US, including access (or lack thereof) to quality care and sickle cell disease expertise. Methods We conducted a multi-site rapid qualitative research study in order to evaluate a construct informed by literature review and clinical experience: variability between hospitals in the characteristics on models of inpatient SCD care delivery. We used virtual focus groups of practicing hospitalists in partnership with the Hospital Medicine Reengineering Network from across the United States. We developed an interview guide with open-ended questions and prompts through an iterative process to explore how inpatient SCD care is currently delivered in US hospitals with a focus on how these models of care delivery affect hospitalist practice (Figure). The open-ended questions explored topics ranging from hospitalists' training and experienceto the design of the health care system. Trained facilitators conducted four semi-structured focus groups with 11 hospitalists and one patient and family advisory council member. The facilitators took observation notes. Moderators summarized their group's overall findings for report to the larger group, serving as an opportunity for member checking and pattern identification. The focus groups lasted 35 minutes and report-out summaries lasted an additional 15 minutes. Recordings were de-identified and transcribed. We used rapid qualitative methods to explore perspectives of hospital-based healthcare providers including: having facilitators with expertise in the content area, collecting and analyzing data via multiple team members, and using templated summaries for each focus group question. Group summaries and transcripts were analyzed with thematic coding by two independent coders with feedback from the focus group moderators. Results Participants were from 12 adult university-based or university-affiliated hospitals. All hospitalists had experience taking care of hospitalized patients with SCD during their career, but many described how a change in practice location resulted in only seeing 1-2 patients with SCD per year. Hospitalists described a range of inpatient SCD care models from no specific model to a specific cohorted unit with associated providers. Participants unanimously expressed having provider and unit continuity of SCD care, and having accessible SCD expertise, as an ideal state. Individualized care plans were cited as a helpful tool for inpatient SCD care, but there were considerable challenges to their routine use. Primary themes are presented in the Table with explanations and correlative illustrative quotes. Discussion and Future Directions Hospitalists described wide variation in inpatient SCD care models. More inpatient SCD care support and infrastructure like individualized care plans were more commonly referenced by those hospitalists whose patients had access to a sickle cell center or SCD expert. We are using these data to inform a national survey to further describe and understand inpatient SCD care, if and how care plans are used, and determine next steps for improving inpatient SCD care quality.

659 Results from a national mixed-methods assessment of patient and family advisory councils and boards

659 Results from a national mixed-methods assessment of patient and family advisory councils and boards

Patient perceptions of in-hospital laboratory blood testing: A patient-oriented and patient co-designed qualitative study.

Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low-value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in-hospital laboratory testing. To understand patient experience with the process of in-hospital laboratory blood testing. We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. We interviewed 16 participants (13patients, 1family memberand 2caregivers). We identified four themes from patients' experiences of in-hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Current laboratory testing processes in hospitals do not facilitate shared decision-making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationaleand results, while considering patient preferences and offering opportunities for involvement. We interviewed 16 patients and/or family members/caregivers regarding their in-hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient-centred. To bring a lived-experience lens to this study, we formed a Patient Advisory Council with 9-11 patient research partners. Our patient research partners informed the research design, co-developed participant recruitment strategies, co-conducted data collectionand informed the data analysis. Some of our patient research partners are co-authors of this manuscript.