Patient Participation In Program Research Articles

AMCP Partnership Forum: Patient input and payer decision-making.

There has been growing consensus for the health care community to become more patient centered by considering patient needs, preferences, and values in decision-making. To advance partnership between payers and patient representatives to gather patient input and incorporate their perspective on the broad range of managed care pharmacy decisions, the AMCP held a multistakeholder Partnership Forum on December 6 and 7, 2023, in Alexandria, Virginia. Forum participants were asked to (1) identify opportunities for patient representatives to engage with payers and other managed care pharmacy decision-makers, (2) recognize challenges and propose potential solutions to establish patient engagement programs between payers and patient representatives, and (3) review and provide input on draft frameworks created by the 2023-24 AMCP Patient Voice Advisory Group. Key themes that emerged from the participant discussion included to assemble and draw upon successful examples and best practices, recognize different levels of engagement, build trust and relationships proactively, create defined access points and open dialogue channels, incorporate the patient perspective as an element of coverage decision-making, leverage existing patient data and reports, crystallize a key message furthering common goals, and facilitate ongoing education and learning.

A qualitative study of the ASPECT Patient Engagement Program designed to teach storytelling and advocacy skills to individuals with visual impairments and allies.

This study examined the impact of the ASPECT (Advocacy, Support, Perspective, Empowerment, Communication, and Training) Patient Engagement Program on its alumni in order to understand how they used the storytelling and advocacy skills they learned, determine the strengths of the program, and identify recommendations for strengthening the program. In spring 2023, eight focus groups and one interview were conducted with ASPECT Program alumni. Inductive coding was used to identify themes. Eight themes emerged and included: (a) reasons alumni joined the ASPECT Program, (b) value of combining persons with visual impairments and allies in one cohort, (c) reflections on personal growth, (d) developing and telling one's story, (e) networking with others, (f) advocacy activities, (g) strengths of the ASPECT Program, and (h) recommendations for improving the ASPECT Program. The ASPECT Program provided alumni the opportunity to better understand their own eye health and/or the eye health of others, learn to impactfully tell their story to diverse stakeholders, develop their advocacy skills, and network with others. The use of a training program that includes those with visual impairments and allies is an effective method for providing high-quality training to a diverse group. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Breaking the bad news of cancer: Exploring patient-doctor communication among clinical oncologists in Nigeria.

e23251 Background: Nigeria ranks top on the incidence of cancer as well as on cancer-related deaths in Africa with an estimated 72,000 cancer-related deaths and 124,000 incidences annually. Cancer patients in this population, report some of the worst patient outcomes. Previous studies have explored several systems and patient-level factors responsible for the high cancer mortality, and poor outcomes. The process of breaking the ‘bad’ news of cancer to patients by the clinical oncologists in Nigeria has remained an understudied area. This study aims to explore the process of breaking the ‘bad’ news of cancer to patients by clinical oncologists (COs) in Nigeria. Methods: Participants ( N = 24) were clinical oncologists who treat and care for cancer patients in Nigeria. We used a semi-structured interview for the data collection. All the data were managed using Dedoose and used grounded theory for the data analysis. Results: Five themes were identified: (1) the process of breaking the ‘bad’ news is overwhelming, (2) COs need training on patient-doctor communication, (3) every process of breaking the bad news should be unique (4) patients should be the primary focus and (5) clinical workload is affecting the capacity of CO in breaking the ‘bad’ news. Conclusions: The findings show that there is a need for a more robust patient engagement and navigation program focused on empowering patients to ask the right questions. There is a need for the government to explore ways of reducing clinical workload among COs.

Abstract PO2-25-12: Production of a bespoke muscle resistance exercise (MRE) programme for use in a future clinical trial, following a detailed patient engagement program (PEP) in patients with advanced breast cancer (ABC)

Abstract Background: MRE investigations in early breast cancer have been undertaken but there has been little evaluation in ABC. Cancer guidelines suggest the use of physical activity, including MRE, to improve fatigue (National Comprehensive Cancer Network, 2.2020; European Society of Medical Oncology 2020) but improvement in other outcomes in ABC is less clear. In clinical trials, adherence to exercise intervention has been a challenge and has hampered investigation of other outcomes and little data exists evaluating the possible reasons for this poor adherence and compliance. In preparation for an exercise component as part of lifestyle intervention trial in ABC, a PEP was undertaken to evaluate an on-line web-based exercise program. Results would support continued usage of the program or creation of a new program. Methods: A commercially available program was used containing a library of exercises created for multiple disease types. There was no voice over. Using an exercise science professional, 2 sets of muscular resistance exercise programmes were created (A &B), selecting exercises for upper and lower limb major muscle groups. Set A and B differed , with A involving younger leaner demonstrators and B older, less lean. Volunteers were asked to view the sets and complete a survey. The results of the survey, involving 21 volunteers of which 43% were over 60 years and presented previously, indicated that the following main modifications were needed to a program: use of demonstrators similar to patient's habitus and use of a voice-over to guide exercises. A short test video was produced incorporating these and other visual changes and viewed by a focus group of four volunteers. Results: The focus group concluded that the new visual and audio changes would allow them to more easily perform the exercises and increase the likelihood of compliance compared to the on-line program. The group advised involvement of a more diverse demonstrator group and further improvements to the voice-over. A professionally produced video has now been made with all the above changes. Conclusions: This PEP indicates that is necessary to review exercise programmes with patients and not assume they are all suitable for use in clinical trials. We believe a PEP of this kind with the resultant bespoke video is the first produced involving patients with ABC. This video will now be evaluated in a much larger diverse PPE which will help the development of a national UK clinical trial of exercise in ABC. Citation Format: Amanda Clarke, Jennifer Glendenning, Glen Davison, Catherine Harper-Wynne. Production of a bespoke muscle resistance exercise (MRE) programme for use in a future clinical trial, following a detailed patient engagement program (PEP) in patients with advanced breast cancer (ABC) [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-25-12.

RISK DRIVERS FOR NON-ADHERENCE IN PATIENTS TREATED FOR HYPERTENSION

Objective: Adherence to treatment remains an unmet need in hypertension with important clinical and financial consequences for patients, HCPs, and health systems. The objective of this study is to identify the behaviors of patients treated for hypertension, and specially the drivers of risk of non-adherence across 3 European countries: UK, Spain, and France. Design and method: Two questionaries were utilized for data collection: a sociodemographic and medical patient questionnaire and the SPUR questionnaire, a validated Patient-Reported Outcome Measurement tool developed by Observia. The questionnaires were taken by 122 patients with hypertension who were recruited through patient panels on random basis to avoid selection bias. Results: The recruited patient population presented following characteristics: mean age 57 years, 60% male, with the most common comorbidities being diabetes (40% of patients), dyslipidemia (33%), and depression (25%). The transversal analysis in three countries showed the most important behavioral drivers of non-adherence: - Time (score∗: 53-66) - patients underestimating future benefits of the treatment over the burden of taking it today. - Treatment risks (score∗: 44-45) – patients are concerned about potential side effects of the treatment. - Societal (score∗: 40-44) - patients worry about the impact that hypertension has on their social life (i.e., at work, social activities, interaction with acquaintances). The next three drivers for the RNA were the underestimation by the patient of the disease gravity, financial difficulties, and family life (immediate driver). This was common for all the countries of the study. Conclusions: The results provide insights on the main behavioral drivers of non-adherence to hypertension treatment. These results should be confirmed in a larger population to be used as the basis for developing patient engagement programs to increase adherence. These should be co-constructed with HCPs and patients themselves to efficiently target identified main drivers of non-adherence in hypertension. ∗The drivers of risk of non-adherence are scored using Observia's proprietary SPUR algorithm, more information can be found in publications on SPUR.

Hand Hygiene Practices and Promotion in Public Hospitals in Western Sierra Leone: Changes Following Operational Research in 2021.

Hand hygiene is the most important intervention for preventing healthcare-associated infections and can reduce preventable morbidity and mortality. We described the changes in hand hygiene practices and promotion in 13 public hospitals (six secondary and seven tertiary) in the Western Area of Sierra Leone following the implementation of recommendations from an operational research study. This was a "before and after" observational study involving two routine cross-sectional assessments using the WHO hand hygiene self-assessment framework (HHSAF) tool. The overall mean HHSAF score changed from 273 in May 2021 to 278 in April 2023; it decreased from 278 to 250 for secondary hospitals but increased from 263 to 303 for tertiary hospitals. The overall mean HHSAF score and that of the tertiary hospitals remained at the "intermediate" level, while secondary hospitals declined from "intermediate" to "basic" level. The mean score increased for the "system change" and "institutional safety climate" domains, decreased for "training and education" and "reminders in the workplace" domains, and remained the same for the "evaluation and feedback" domain. Limited resources for hand hygiene promotion, lack of budgetary support, and formalized patient engagement programs are the persistent gaps that should be addressed to improve hand hygiene practices and promotion.

Effectiveness of a nurse-led personalized patient engagement program to promote type 2 diabetes self-management: A randomized controlled trial.

PHEinAction® is a theory-based nurse-led patient engagement intervention developed among an Italian older adult population with various chronic diseases to facilitate cognitive, emotional, and behavioral processes in promoting individuals' active roles. This study aims to adapt and evaluate the effectiveness of PHEinAction® on diabetes self-management (DSM) among Turkish type 2 diabetes mellitus patients. First, the generic content of the intervention was customized for diabetes management and adapted for the Turkish population, including back-forward translation and expert panel evaluation; then, a randomized controlled trial was conducted with 51 adult diabetes patients randomly assigned to intervention or the control group receiving the usual care. The intervention consisted of two in-person sessions of 4-week intervals, a telephone consultation, and home-based written exercises, which involved personalized care activities addressing individuals' engagement levels and covering the cognitive, emotional, and behavioral aspects. The scores for treatment adherence, self-efficacy, and patient engagement had significantly improved with a large size effect in the intervention group at the fourth-week follow-up compared with the control group. Findings suggest that the nurse-led personalized patient engagement program could effectively promote DSM.

Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network

BackgroundThe Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An important focus of the CPN is to work in collaboration with patient partners. Patient partners, researchers and clinicians work together in all aspects of the research network including on funded research projects and in the governance of the Network. Given this focus, the CPN identified the importance of evaluating their patient engagement work to understand its functioning and impact.MethodsThe objective of this exploratory evaluation case study was to understand the impacts of patient engagement on the CPN. The CPN worked with an external evaluation team which established an arms-length approach to the evaluation. Interviews were conducted with CPN members, including patient partners, leadership, funded researchers and committee co-chairs, at three discrete time points to trace the evolution of the patient engagement program within the Network. Key Network documents were also collected and reviewed. Data were analyzed following each set of interviews using content analysis guided by the principles of constant comparison and qualitative description. A final round of analysis was conducted using the Engage with Impact Toolkit, an impact measurement framework, to identify impacts of engagement.ResultsImpacts of patient engagement were identified at the individual, network, funded research project and research community levels. These impacts were observed in the following areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain.ConclusionsWhile not without challenges, the patient engagement efforts of the CPN demonstrates the impact engaging patient partners can have on a national research network and related policy activities. Understanding the approaches to, and impacts of, patient engagement on health research networks can illuminate the value of having patient partners engaged in all aspects of a research network and should serve as encouragement to others who look to take on similar work.

Delivery of Community-based Antiretroviral Therapy to Maintain Viral Suppression and Retention in Care in South Africa.

To determine whether the Centralized Chronic Medication Dispensing and Distribution (CCMDD) program in South Africa's differentiated ART delivery model affects clinical outcomes, we assessed viral load (VL) suppression and retention in care between patients participating in the program and those receiving the clinic-based standard of care. Clinically stable people living with HIV (PLHIV) eligible for differentiated care were referred to the national CCMDD program and followed up for up to 6 months. In this secondary analysis of trial cohort data, we estimated the association between routine patient participation in the CCMDD program and their clinical outcomes of viral suppression (<200 copies/mL) and retention in care. Among 390 PLHIV, 236 (61%) were assessed for CCMDD eligibility; 144 (37%) were eligible, and 116 (30%) participated in the CCMDD program. Participants obtained their ART in a timely manner at 93% (265/286) of CCMDD visits. VL suppression and retention in care was very similar among CCMDD-eligible patients who participated in the program compared with patients who did not participate in the program (aRR: 1.03; 95% CI: 0.94-1.12). VL suppression alone (aRR: 1.02; 95% CI: 0.97-1.08) and retention in care alone (aRR: 1.03; 95% CI: 0.95-1.12) were also similar between CCMDD-eligible PLHIV who participated in the program and those who did not. The CCMDD program successfully facilitated differentiated care among clinically stable participants. PLHIV participating in the CCMDD program maintained a high proportion of viral suppression and retention in care, indicating that community-based ART delivery model did not negatively affect their HIV care outcomes.

Evaluating a patient engagement program within a national research network

AbstractBackgroundThe Engagement of People with Lived Experience of Dementia (EPLED) is a program within the Canadian Consortium on Neurodegeneration in Aging (CCNA). The role of EPLED is to enable those with lived experience of dementia – persons with dementia and their care partners (i.e., friends, family and caregivers) – to be meaningfully and actively involved in the CCNA research process. The EPLED Advisory Group is composed of people with lived experience of dementia.MethodThe EPLED researchers, Advisory Group and program staff worked to develop an approach to evaluate EPLED activities. Evaluation will include capturing quantitative data on Advisory Group activities (e.g., number and nature of projects) as well as Advisory Group and CCNA perspectives on the engagement activity. Existing resources were used to identify key domains and Advisory Group members were invited to share their perspectives on the most relevant questions, including by voting on existing questions or suggesting their own. Ultimately, the Patient Engagement in Research Scale (PEIRS‐22) was selected to capture Advisory Group perspectives, but with two additional questions, from the full (37‐item) PEIRS and free‐text questions. EPLED also developed a short questionnaire for CCNA researchers to evaluate their experience working with Advisory Group members, including questions related to timing, objectives, engagement, collaboration and impact. Both questionnaires were transferred to Google Forms for online data collection.ResultWe will present the EPLED program evaluation plan and data from the first year of activities. We will describe the nature of the Advisory Group’s work as well as the perceptions from members and researchers.ConclusionPatient engagement in research is becoming more widespread and, for some research funding, an expectation. Our evaluation plan will be used to improve the EPLED program and plan future activities. Our results may also help other patient partners, researchers and research organisations to develop and implement their own activities.

A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program.

Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research. Six liver transplantation patient-engagement program advisors completed training in patient engagement; participated in several virtual sessions; and completed postsession surveys. Qualitative and quantitative results elucidated patient-centered liver transplantation study outcomes and barriers/facilitators to conducting clinical research. Group satisfaction was very high. The liver transplantation patient-engagement program model provides a paradigm for how to engage patients in the formative steps of patient-centered clinical research.

299EMF Community Outreach for Patient Engagement: A Randomized Controlled Trial Using Implementation Framework

The University of Vermont Health Network (UVMHN) is the largest health care system in Vermont (VT) and New York’s northern region, serving a rural catchment area of over 1 million people. We have identified that there is a critical need to address patients’ difficulty with accessing primary/subspecialty care, resulting in frequent ED visits. For patients who visit the ED >3 times in the past 90 days, the Community Outreach for Patient Engagement (COPE) program aims to reduce emergency department (ED) utilization and address rural health care disparities by improving access to primary and subspecialty care follow up, expanding adherence to care plans and health care markers (increased medication adherence, housing stability, and food security), and decreasing costs by reducing ED use through improved access to health care.

Association of Prehabilitation With Postoperative Opioid Use in Colorectal Surgery: An Observational Cohort Study.

Preoperative optimization programs have demonstrated positive effects on perioperative physical function and surgical outcomes. In nonsurgical populations, physical activity and healthy diet may reduce pain and pain medication requirement, but this has not been studied in surgical patients. Our aim was to determine whether a preoperative diet and exercise intervention affects postoperative pain and pain medication use. Patients undergoing abdominal colorectal surgery were invited to participate in a web-based patient engagement program. Those enrolling in the first and third time periods received information on the standard perioperative pathway (enhanced recovery after surgery [ERAS]). Those enrolling in the second time period also received reminders on nutrition and exercise (PREHAB+ERAS). The primary outcome was postoperative inpatient opioid use. The secondary outcomes were inpatient postoperative pain scores and nonopioid pain medication use. The ERAS and PREHAB+ERAS groups were similar in demographic and operative characteristics. Subgroup analysis of patients who activated their accounts demonstrated that the two groups had similar average maximum daily pain scores, but the PREHAB+ERAS group (n=158) used 15.9 fewer oral morphine equivalents per postoperative inpatient day than the ERAS group (n=92), representing a 30% decrease (53mg versus 37.1mg, P=0.04). The two groups used comparable amounts of acetaminophen, gabapentin, and ketorolac. Generalized linear models demonstrated that PREHAB+ERAS, minimally invasive surgery, and older age were associated with lower inpatient opioid use. Access to a web-based preoperative diet and exercise program may reduce inpatient opioid use after major elective colorectal surgery. Further studies are necessary to determine whether the degree of adherence to nutrition and physical activity recommendations has a dose-dependent effect on opioid use.

Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network

BackgroundDespite increasing commitment to patient engagement in research, evaluation of the impact of these efforts on research processes, products, and teams is limited.ObjectiveTo explore the impacts of engaging patients as consultants to research studies by examining the experiences, impacts, and lessons learned from a program facilitating patient engagement at a Veterans Health Administration research center.DesignWe developed a logic model to articulate the activities being implemented to support patient engagement and their anticipated outcomes. Then, we conducted qualitative, semi-structured interviews with participants in the local Veteran Consulting Network to qualitatively explore these outcomes.ParticipantsTwelve researchers and eleven Veteran patients with experience working on at least one grant or funded study.ApproachInterview transcripts were inductively coded using a consensus-based approach. Findings were synthesized using framework analysis and mapped back onto our logic model of expected patient engagement impacts.Key ResultsPatient engagement improved the perceived quality and relevance of research studies as patient consultants challenged researchers’ assumptions about patient populations and clinical contexts and gave feedback that helped improve the feasibility of proposed grants, readability of study materials, comprehensiveness of study assessments, and cultural sensitivity and relevance of interventions. Patient engagement also had personal benefits to researchers and patients. Researchers reported improved communication skills and higher job satisfaction. Patients reported a sense of purpose and satisfaction from their work with greater awareness of and appreciation for research.ConclusionsEngaging patients in research can have multiple benefits to the people and work involved. Our evaluation process can serve as a template for other organizations to plan for and assess the impact of their own patient engagement programs. Creating logic models and updating them based on feedback from program users make engagement goals explicit, help verify expected mechanisms to achieve impact, and facilitate organizational learning.

Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer

The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured interviews with seven participants. The interview questions focused on why patients with metastatic cancer volunteered in patient engagement, the experiences and challenges they encountered as volunteers and what they wanted to achieve in their participation. The interviews were transcribed by the interviewer with personal details redacted for confidentiality. Optional member-checking occurred with three participants. After the interviews, two participants joined the research team to participate in data analysis and interpretation of the findings. Thematic analysis was used to identify common themes in the transcribed and redacted participant interviews. The resulting themes were contributing fully, creating a better cancer experience, making meaningful connections, giving back, and struggling with the system. These findings yielded theme-based advice for both patient partners and administrators for creating meaningful patient engagement. Further research led by patient partners could contribute to a more empowered patient engagement program. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

BackgroundEngland operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research.MethodsA patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use.ResultsThere were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group.Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO.Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data.ConclusionThe majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

Patient Engagement in Research Design and Implementation: Moving From Infancy to Adolescence

Patient (also referred to as User or Older Adult) engaged research is a unique approach to research design, implementation, and dissemination. The practice of engaged research, in its broader sense, involves service recipients, caregivers, clinicians, and other stakeholders in prioritization of research questions, approach, and practice translation to ensure strong stewardship of funds, valid and reliable methods, and practical application. Patient engaged research also aligns with tenets of person-centered care in the inclusive nature and the expectation that the practice will improve the processes and the outcomes of research. Likewise, GSA’s focus on diversity of thought through interdisciplinary work strongly aligns with inclusion of patient and stakeholder voices in the performance of interdisciplinary research. Although patient and stakeholder engagement in research is a new approach for many, globally, funders increasingly require evidence of “meaningful” engagement in project proposals. In the United States, the Patient-Centered Outcomes Research Institute (PCORI) is well-known for funding engaged research and the National Institute on Aging (NIA) has demonstrated use of “collaborative” methods central to patient engagement within the IMPACT Collaboratory. Patient engagement literature, while growing, does not yet provide adequate guidance for replication of current or development of new approaches to patient engagement in research. Therefore, the purpose of this symposium is to frame patient engagement through a historic lens (Roes) and discuss the ethics of engagement (O’Sullivan). In addition, we will share program outcomes from three patient engagement programs: the Leading Age LTSS Center, Rural Patient & Stakeholder Engagement, and Sages in Every Setting. Patient/Person Engagement in Research Interest Group Sponsored Symposium.

Abstract 17161: Type and Intensity of Strategies to Reduce Readmissions Under the Hospital Readmissions Reduction Were Not Associated With Improvements in Readmission Rates

Background: Little is known about what strategies are associated with improvements in hospital readmissions under the Hospital Readmissions Reduction Program. Objective: To determine whether the type or intensity of readmission reduction strategies were associated with changes in readmission rates for heart failure, acute myocardial infarction, and pneumonia among acute care hospitals participating in the HRRP. Methods: We surveyed leaders of 1,600 U.S. acute care hospitals participating in the HRRP about their use of 13 specific strategies to reduce readmissions. Strategies were grouped into three domains: transitions of care (TOC, e.g. discharge checklist), quality improvement (QLT, e.g. medication reconciliation), and patient-centered (PC, e.g. patient engagement programs). Intensity of each domain was scored as high or low according to how many strategies were implemented. We calculated hospital-level readmission rates prior to (2011-12) and following (2014-15) HRRP implementation. We used linear regression to determine if there were associations between individual strategies, domains, or overall scope of strategies and a reduction in readmission rates. Results: Of the 1,600 hospitals surveyed, 926 participated (58% response rate). Hospitals reported using 6.1 (SD 2.5) strategies on average. TOC was the most commonly used domain: 69% of hospitals scored high intensity in TOC, compared to only 22% and 14% of hospitals scoring high intensity in QLT and PC domains, respectively. After adjusting for hospital size, type, teaching status, and location, there were no statistically significant associations between any individual strategy and changes in readmission rates, nor between domain intensity and changes in readmission rates. Nearly half of all hospitals, 49%, scored high in only one domain; only 22% scored high in two domains and 5% scored high in all three domains. In fully adjusted models, there was no association between scoring high in multiple domains and reducing readmission rates. Conclusions: Under the HRRP, hospitals focused most on transitions of care strategies. There was no evidence that any of the most commonly employed strategies for reducing readmissions were associated with differential changes in readmission rates.

Perceptions of Anonymised Data Use and Awareness of the NHS Data Opt-Out Amongst Patients, Carers and Healthcare Staff

Introduction: Public awareness and support for secondary health data use may vary by health care experience and participant demographics. Those in England can “opt out” of data secondary use. We explored the awareness, support for and concerns about anonymised healthcare data secondary use and the NHS data opt-out system amongst patients, carers, healthcare staff and the public within the West Midlands. Methods: A patient and public engagement program was completed between February 2019 and July 2020 through PIONEER, conducted at University Hospitals Birmingham NHS Foundation Trust and public venues. This program included patient and public workshops, questionnaires regarding anonymised health data use and feedback discussion groups. Results: Central themes of the benefits and concerns for health data use were agreed by patient and public participants. Key public and patient priorities were projects leading to patient benefit, oversight by the NHS as a trusted organisation, increasing awareness of the NHS data opt-out, and ongoing transparency and public/patient involvement. Questionnaires (308 respondents) showed 31.8% were aware of the NHS data opt-out. 93.8% were happy for their data to be used for NHS research, 84.8% for academic research and 68.4% by health companies. However, opinion varied across groups (age, gender or public, patient, NHS staff and volunteers).Four action points were agreed in workshops based on these results: namely, education regarding the NHS opt-out, increased public awareness of data use, public involvement in data requests with NHS oversight, and transparency including reporting data use and subsequent patient benefit. Conclusion: Use of anonymised healthcare data for secondary purposes is acceptable to most patients, carers and healthcare workers. However, awareness is limited, including of the NHS data opt-out system. Initiatives to improve awareness and publicise potential benefits are needed amongst patients, healthcare staff and the public. Funding Statement: This work was supported by PIONEER, the Health Data Research UK (HDR-UK) Health Data Research Hub in acute care. HDR-UK is an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities. Declaration of Interests: CA, BC, KD, GP, EM, MO’H, CM, AI, CC, ML, SM, SG, SP, JA, RD, AR, HF have no conflicts of interest. GG reports funding from HDR-UK. AKD reports funding from HDRUK, The Wellcome Trust and Fight for Sight. ES reports funding from the Wellcome Trust, MRC, HDR-UK, Alpha 1 Foundation (A1F), British Lung Foundation and NIHR. Ethics Approval Statement: PIONEER is an ethically-approved research database and analytical environment (East Midlands – Derby Research Ethics 20/EM/0158). This PPIE work was conducted following ethical approval from the University of Birmingham Ethical Committee (reference ERN_20-0118).

View From the Canoe: Co-Designing Research Pacific Style.

In 2016, Rose Lamont and Tana Fishman were the first patient-clinician dyad from outside North America to attend the North American Primary Care Research Group (NAPCRG) Patient and Clinician Engagement Program workshop. They returned to New Zealand inspired and formed the Pacific People's Health Advisory Group and a Pacific practice-based research network (PBRN). They are guided by the principles of co-design, and the Samoan research framework fa'afaletui, which emphasizes a collective approach and importance of reciprocity and relationships. Their collective inquiry aims to reduce health inequalities experienced by Pacific people in South Auckland. Their community group members and PBRN are generating research questions being answered by university-based graduate students. When they embarked, they knew not the direction in which they headed. With guidance, their community members and clinicians have led the way. By giving everyone a say in where they are going and how they get there, they are modeling what they wish to achieve-an egalitarian approach which decreases disparities for Pacific people.