Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review.

BACKGROUND: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. METHODS: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). FINDINGS: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty-four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher-income countries (n = 51). Community-based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist-utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). CONCLUSIONS: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. PATIENT AND PUBLIC CONTRIBUTION: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. REVIEW REGISTRATION: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/).

Access to urban green spaces and use of social services and institutional long-term care among older people in Malmö, Sweden: a longitudinal register study.

BACKGROUND: Finding ways to prolong independence in daily life among older people would be beneficial for both individuals and society. Urban green spaces have been found to improve health, but only a few studies have evaluated the association between urban green spaces and independence in daily life. The aim of this study was to assess the long-term effect of urban green spaces on independence in daily life, using social services and support, mobility aids, and relocation to institutional long-term care as proxies, among community dwelling people 65 + years. METHODS: We identified 40 357 people 65 + years living in the city of Malmö, Sweden in 2010. Using geographical information systems (GIS), we determined the amount of urban green spaces (total, public, and quiet) within 300 m of each person's residence. All three measures were categorized based on their respective percentiles, so that the first quartile represented the 25% with the least access and the fourth quartile the 25% with the most access. In 2015 and 2019, we assessed the outcomes minor assistance (non-personal support), major assistance (personal support), and relocation into institutional long-term care. These three outcome measures were used as proxies for independence in daily life. The effect of amount of urban green spaces in 2010 on the three outcomes in 2015 and 2019, respectively, was assessed by pairwise comparing the three highest quartiles to the lowest. RESULTS: Compared to the lowest quartile, those in the highest quartile of quiet green spaces in 2010 were less likely to receive minor assistance in both 2015 and 2019. Besides this, there were no indications that any of the measures of urban green space affected independence in daily life at the five- and nine-year follow-up, respectively. CONCLUSION: Although urban green spaces are known to have positive impact on health, physical activity, and social cohesion among older people, we found no effect of total, public, or quiet green spaces on independence in daily life. This could possibly be a result of the choice of measures of urban green spaces, including spatial and temporal aspects, an inability to capture important qualitative aspects of the green spaces, or the proxy measures used to assess independence in daily life.

Employment Status Following Heart Transplantation: Data From the Danish Nationwide Social Service Payment Register During 20 years.

Most studies on vocational rehabilitation after heart transplantation (HTX) are based on self-reported data. Danish registries include weekly longitudinal information on all public transfer payments. We intended to describe 20-year trends in employment status for the Danish heart-transplant recipients, and examine the influence of multimorbidity and socioeconomic position (SEP). Linking registry and Scandiatransplant data (1994-2018), we conducted a study in recipients of working age (19-63 years). The cohort contained 492 recipients (79% males) and the median (IQR) age was 52 years (43-57 years). Five years after HTX, 30% of the survived recipients participated on the labor market; 9% were in a flexible job with reduced health-related working capacity. Moreover, 60% were retired and 10% eligible for labor market participation were unemployed. Recipients with multimorbidity had a higher age and a lower prevalence of employment. Five years after HTX, characteristics of recipients with labor market participation were: living alone (27%) versus cohabitation (73%); low (36%) versus medium-high (64%) educational level; low (13%) or medium-high (87%) income group. Heart-transplant recipients with multimorbidity have a higher age and a lower prevalence of employment. Socioeconomically disadvantaged recipients had a lower prevalence of labor market participation, despite being younger compared with the socioeconomically advantaged.

Community Health Work and Social Work Collaboration: Integration in Health Care and Public Health Settings: A Conceptual Framework.

Community health worker (CHW) and social worker (SW) collaboration is crucial to illness prevention and intervention, yet systems often engage the 2 workforces in silos and miss opportunities for cross-sector alignment. In 2021, a national workgroup of over 2 dozen CHWs, SWs, and public health experts convened to improve CHW/SW collaboration and integration across the United States. The workgroup developed a conceptual framework that describes structural, systemic, and organizational factors that influence CHW/SW collaboration. Best practices include standardized training, delineated roles and scopes of practice, clear workflows, regular communication, a shared system for documentation, and ongoing support or supervision.

Professional regulation in the digital era: A qualitative case study of three professions in Ontario, Canada.

Technology is transforming service delivery and practice in many regulated professions, altering required skills, scopes of practice, and the organization of professional work. Professional regulators face considerable pressure to facilitate technology-enabled work while adapting to digital changes in their practices and procedures. However, our understanding of how regulators are responding to technology-driven risks and the impact of technology on regulatory policy is limited. To examine the impact of technology and digitalization on regulation, we conducted an exploratory case study of the regulatory bodies for nursing, law, and social work in Ontario, Canada. Data were collected over two phases. First, we collected documents from the regulators' websites and regulatory consortiums. Second, we conducted key informant interviews with two representatives from each regulator. Data were thematically analyzed to explore the impact of technological change on regulatory activities and policies and to compare how regulatory structure and field shape this impact. Five themes were identified in our analysis: balancing efficiency potential with risks of certain technological advances; the potential for improving regulation through data analytics; considering how to regulate a technologically competent workforce; recalibrating pandemic emergency measures involving technology; and contemplating the future of technology on regulatory policy and practice. Regulators face ongoing challenges with providing equity-based approaches to regulating virtual practice, ensuring practitioners are technologically competent, and leveraging regulatory data to inform decision-making. Policymakers and regulators across Canada and internationally should prioritize risk-balanced policies, guidelines, and practice standards to support professional practice in the digital era.

Reporting on Health Care and Social Service Provider Approaches to Promoting Alcohol Abstinence During Pregnancy.

Despite the known detrimental health effects of alcohol use during pregnancy, there are still health care (HCP) and social service providers (SSP) who do not promote complete abstinence. The purpose of this study was to explore the current practices of HCPs and SSPs when discussing alcohol use during pregnancy, and to understand their rationale for their specific recommendations. An online survey was completed by 1123 HCPs (n = 588) and SSPs (n = 535) that asked them to identify their approach to discussing alcohol and pregnancy. Participants had the option to further explain their current recommendations regarding alcohol use during pregnancy in an open-ended format. Open-ended responses were analyzed using a content analysis approach (n = 156). The majority of respondents recommend abstinence (83.9% of HCPs, n = 493; 78.4% of SSPs, n = 419), while 9.8% of HCPs (n = 57) and 2.2% of SSPs (n = 12) responded that low levels of consumption may be acceptable. HCPs may recommend low levels of consumption based on other international guidelines, limited evidence to suggest that one unit of alcohol is harmful, and as a harm reduction strategy. SSPs stated that they refer clients to HCPs for recommendations related to alcohol consumption, and that they prefer to provide information based on public health guidelines. This exploratory work may inform the development of resources to support HCPs and SSPs to recommend abstinence from alcohol throughout gestation.

Factors influencing effective data sharing between health care and social care regarding the care of older people: a qualitative evidence synthesis.

Background: Sharing data about patients between health and social care organisations and professionals, such as details of their medication, is essential to provide co-ordinated and person-centred care. While professionals can share data in a number of ways - for example, through shared electronic record systems or multidisciplinary team meetings - there are many factors that make sharing data across the health and social care boundary difficult. These include professional hierarchies, inaccessible electronic systems and concerns around confidentiality. Data-sharing is particularly important for the care of older people, as they are more likely to have multiple or long-term conditions; understanding is needed on how to enable effective data-sharing. Objectives: To identify factors perceived as influencing effective data-sharing, including the successful adoption of interventions to improve data-sharing, between healthcare and social care organisations and professionals regarding the care of older people. Methods: MEDLINE and seven further databases were searched (in March 2023) for qualitative and mixed-methods studies. Relevant websites were searched and citation-chasing completed on included studies. Studies were included if they focused on older people, as defined by the study, and data-sharing, defined as the transfer of information between healthcare and social care organisations, or care professionals, regarding a patient, and were conducted in the United Kingdom. Purposive sampling was used to obtain a final set of studies which were analysed using framework synthesis. Quality appraisal was conducted using the Wallace checklist. Stakeholder and public and patient involvement groups were consulted throughout the project. Results: Twenty-four studies were included; most scored highly on the quality appraisal checklist. Four main themes were identified. Within Goals, we found five purposes of data-sharing: joint (health and social care) assessment, integrated case management, transitions from hospital to home, for residents of care homes, and for palliative care. In Relationships, building interprofessional relationships, and therefore trust and respect, between professionals supported data-sharing, while the presence of professional prejudices and mistrust hindered it. Interorganisational Processes and procedures, such as a shared vision of care and operationalisation of formal agreements, for example data governance, supported data-sharing. Within Technology and infrastructure, the use of technology as a tool supported data-sharing, as did professionals' awareness of the wider care system. There were also specific factors influencing data-sharing related to its purpose; for example, there was a lack of legal frameworks in the area of palliative care. Limitations: Data-sharing was usually discussed in the context of wider initiatives, for example integrated care, which meant the information provided was often limited. The COVID-19 pandemic has had significant impacts on ways of working; none of our included studies were conducted during or since the pandemic. Conclusions: Our findings indicate the importance of building interprofessional relationships and ensuring that professionals are able to share data in multiple ways. Future work: Exploration of the impact of new technologies and ways of working adopted as a result of the COVID-19 pandemic on data-sharing is needed. Additionally, research should explore patient experience and the prevention of digital exclusion among health and social care professionals. Study registration: The protocol was registered on PROSPERO CRD42023416621. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR135660), as part of a series of evidence syntheses under award NIHR130538, and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 12. See the NIHR Funding and Awards website for further award information.

Health and social care organisations and professionals need to share data about older people. Data ­ for example, details of medication ­ can be shared in different ways, for example electronic records systems, team meetings. Sharing data is important, especially for people with multiple or long-term conditions as they may need co-ordinated help from health and social care services. However, professionals often find it difficult to share data. For example, they may have concerns about confidentiality or may not have access to the same electronic record systems. This review investigated factors that influence data-sharing between health and social care. We found 24 studies that used methods such as focus groups or interviews. We found five main purposes of sharing data in the studies: to assess people's need for health and social care to co-ordinate care for people with existing needs to help people move from hospital to home to care for people living in care homes to support end-of-life care. Factors that help health and social care professionals share data include: having trust and respect for each other having suitable policies and processes in place between their organisations having an awareness of why other professionals need data. New technologies can help professionals share data, but they need to be part of the normal way that people work. These findings could help to improve data-sharing as they show that professionals need multiple ways of sharing data. They also suggest more research is needed so that new technology supports data-sharing. Stakeholders ­ for example, doctors, social workers, and public and patient representatives ­ provided feedback throughout the project. The review contains studies published between 1995 and March 2023.

Leadership in intellectual disability practice: design, development, and evaluation of a programme to support practice.

BACKGROUND: Intellectual disability services have and continue to experience changes in service provision. This has an implication for leadership in practice as the quality of leadership has a direct influence on staff practice and care provided. AIM: To design, deliver, and evaluate a leadership programme for nurse and social care managers in Ireland. DESIGN: An accredited programme was designed based on evidence from literature, practice, and national expertise. A cross-sectional survey was used to collect information on the attitudes and behaviour of participants before commencing and after completing the programme. Data from the questionnaires were analysed using SPSS and open-ended questions were analysed using content analysis. SETTING: Intellectual disability services. PARTICIPANTS: 102 participants completed the programme and survey. METHODS: Pre-post survey and reported using the CROSS guidelines. RESULTS: Participants' expectations were rated highly, and all items scored higher in the post-survey. Qualitative data was overall positive regarding opportunities for more time to work through each aspect of the programme. The key learning was through the forum day where participants shared their group projects. CONCLUSIONS: Overall, the programme was positively evaluated and through engaging with the programme participants' perceptions moved from seeing leadership as mostly task-oriented to realising that qualities such as good communication, person-centredness, advocacy, supporting, role modelling, and empowering are key to leadership.

Implementing Inpatient Social Needs Screening in an Urban Tertiary Care Children's Hospital.

BACKGROUND AND OBJECTIVES: The American Academy of Pediatrics recommends screening for unmet social needs, and the literature on inpatient screening implementation is growing. Our aim was to use quality improvement methods to implement standardized social needs screening in hospitalized pediatric patients. METHODS: We implemented inpatient social needs screening using the Model for Improvement. An interprofessional team trialed interventions in a cyclical manner using plan-do-study-act cycles. Interventions included a structured screening questionnaire, standardized screening and referrals workflows, electronic health record (EHR) modifications, and house staff education, deliberate practice, and feedback. The primary outcome measure was the percentage of discharged patients screened for social needs. Screening for social needs was defined as a completed EHR screening questionnaire or a full social work evaluation. Process and balancing measures were collected to capture data on screening questionnaire completion and social work consultations. Data were plotted on statistical process control charts and analyzed for special cause variation. RESULTS: The mean monthly percentage of patients screened for social needs improved from 20% at baseline to 51% during the intervention period. Special cause variation was observed for the percentage of patients with completed social needs screening, EHR-documented screening questionnaires, and social work consults. CONCLUSIONS: Social needs screening during pediatric hospitalization can be implemented by using quality improvement methods. The next steps should be focused on sustainability and the spread of screening. Interventions with greater involvement of interdisciplinary health care team members will foster process sustainability and allow for the spread of screening interventions to the wider hospitalized pediatric population.

A Realist Evaluation of Social Care Practitioners' Experiences With and Understanding of Applied Healthcare Research.

Social care practitioners are often under-represented in research activity and output. Evidence-based practice enables social care practitioners to develop/engage the skills to evaluate evidence and be more actively involved in research. REalist Synthesis Of non-pharmacologicaL interVEntions for antipsychotic-induced weight gain (RESOLVE) is a NIHR-funded study where realist synthesis is used to understand and explain how, why, for whom, and in what contexts non-pharmacological interventions help service users, with severe mental illness, to manage antipsychotic-induced weight gain. Social care practitioners are a key part of the team providing care for people living with severe mental illness and therefore supporting antipsychotic-induced weight gain. The current study, RESOLVE 2, uses realist evaluation and RESOLVE as an illustrative example to help understand why and how social care practitioners engage (or not) with research. Semi-structured, audio-recorded interviews will be undertaken with a purposive sample of approximately 20 social care practitioners working with people who have severe mental illness, are treated with antipsychotics, and have experienced weight gain. Participants will be recruited from NHS Trusts and recruitment avenues such as social media and personal networks. Topics discussed during interviews will include barriers and facilitators to engagement in research, current, and past engagement as well as recommendations for researchers and other practitioners. Interview recordings will be transcribed verbatim and analyzed using realist evaluation which will allow in-depth causal explanations for research engagement. Better understanding of research engagement by social care practitioners will allow for evidence-based practice and better patient outcomes within these settings.

Advancing a collective vision for equity-based cocreation through prototyping at an international forum.

BACKGROUND: Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity-deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement. OBJECTIVE: The aim of this international forum (CoPro2022) was to advance a collective vision for equity-based cocreation. DESIGN: A participatory process of engagement in experiential colearning and arts-based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity-based cocreation. SETTING AND PARTICIPANTS: The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). COPRO2022 ACTIVITIES: CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity-based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross-cutting themes. These informed the design of an illustrated collective vision for Equity Based Co-Creation (EqCC). RESULTS: Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross-cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities. PATIENT OR PUBLIC CONTRIBUTION: Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co-led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art-based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.

Measures of Referral vs Receipt of Social Services Among Patients With Health-Related Social Needs.

This cohort study compares measures of referral vs receipt in evaluating social resource platform outcomes among patients with health-related social needs.

"So at least now I know how to deal with things myself, what I can do if it gets really bad again"-experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study.

BACKGROUND: Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case management (CCM) helps ensure optimal individual care as well as care at a higher-level. The goal of the current qualitative study was to determine the experiences of PwsMS, caregivers and health care specialists (HCSs) with the CCM. METHODS: In the current qualitative sub study, as part of a larger trial, in-depth semi-structured interviews with PwsMS, caregivers and HCSs who had been in contact with the CCM were conducted between 02/2022 and 01/2023. Data was transcribed, pseudonymized, tested for saturation and analyzed using structuring content analysis according to Kuckartz. Sociodemographic and interview characteristics were analyzed descriptively. RESULTS: Thirteen PwsMS, 12 caregivers and 10 HCSs completed interviews. Main categories of CCM functions were derived deductively: (1) gatekeeper function, (2) broker function, (3) advocacy function, (4) outlook on CCM in standard care. Subcategories were then derived inductively from the interview material. 852 segments were coded. Participants appreciated the CCM as a continuous and objective contact person, a person of trust (92 codes), a competent source of information and advice (on MS) (68 codes) and comprehensive cross-insurance support (128 codes), relieving and supporting PwsMS, their caregivers and HCSs (67 codes). CONCLUSIONS: Through the cross-sectoral continuous support in health-related, social, financial and everyday bureaucratic matters, the CCM provides comprehensive and overriding support and relief for PwsMS, caregivers and HCSs. This intervention bears the potential to be fine-tuned and applied to similar complex patient groups. TRIAL REGISTRATION: The study was approved by the Ethics Committee of the University of Cologne (#20-1436), registered at the German Register for Clinical Studies (DRKS00022771) and in accordance with the Declaration of Helsinki.

Social care data and its fitness for integrated health and social care service governance: an exploratory qualitative analysis in the Dutch context.

INTRODUCTION: To date, little is known on how social care data could be used to inform performance-based governance to accelerate progress towards integrated health and social care. OBJECTIVES AND DESIGN: This study aims to perform a descriptive evaluation of available social care data in the Netherlands and its fitness for integrated health and social care service governance. An exploratory mixed-method qualitative study was undertaken based on desktop research (41 included indicators), semi-structured expert interviews (13 interviews including 18 experts) and a reflection session (10 experts). SETTING: The Netherlands; social care is care provided in accordance with the Social Support Act, the Participation Law and the Law for Municipal debt-counselling. RESULTS: This study found six current uses for social care data: (a) communication and accountability, (b) monitoring social care policy, (c) early warning systems, (d) controls and fraud detection, (e) outreaching efforts and (f) prioritisation. Further optimisation should be sought through: standardisation, management of data exchange across domains, awareness of the link between registration and financing, strengthening the overall trust in data sharing. The study found five ways the enhanced social care data could be used to improve the governance of integrated health and social care services: (a) cross-domain learning and cooperation (eg, through benchmarks), (b) preventative measures and early warning systems, (c) give insight regarding the quality and effectivity of social care in a broader perspective, (d) clearer accountability of social care towards contracting parties and policy, (e) enable cross-sector data-driven governance model. CONCLUSION: Although there are several innovative initiatives for the optimisation of the use of social care data in the Netherlands, the current social care data landscape and management is not yet fit to support the new policy initiatives to strengthen integrated health and social care service governance. Directions for addressing the shortcomings are provided.

Advancing social care integration in health systems with community health workers: an implementation evaluation based in Bronx, New York.

BACKGROUND: In recent years, health systems have expanded the focus on health equity to include health-related social needs (HRSNs) screening. Community health workers (CHWs) are positioned to address HRSNs by serving as linkages between health systems, social services, and the community. This study describes a health system's 12-month experience integrating CHWs to navigate HRSNs among primary care patients in Bronx County, NY. METHODS: We organized process and outcome measures using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) implementation framework domains to evaluate a CHW intervention of the Community Health Worker Institute (CHWI). We used descriptive and inferential statistics to assess RE-AIM outcomes and socio-demographic characteristics of patients who self-reported at least 1 HRSN and were referred to and contacted by CHWs between October 2022 and September 2023. RESULTS: There were 4,420 patients who self-reported HRSNs in the standardized screening tool between October 2022 and September 2023. Of these patients, 1,245 were referred to a CHW who completed the first outreach attempt during the study period. An additional 1,559 patients self-reported HRSNs directly to a clinician or CHW without being screened and were referred to and contacted by a CHW. Of the 2,804 total patients referred, 1,939 (69.2%) were successfully contacted and consented to work with a CHW for HRSN navigation. Overall, 78.1% (n = 1,515) of patients reported receiving social services. Adoption of the CHW clinician champion varied by clinical team (median 22.2%; IQR 13.3-39.0%); however, there was no difference in referral rates between those with and without a clinician champion (p = 0.50). Implementation of CHW referrals via an electronic referral order appeared successful (73.2%) and timely (median 11 days; IQR 2-26 days) compared to standard CHWI practices. Median annual cost per household per CHW for the intervention was determined to be $184.02 (IQR $134.72 - $202.12). CONCLUSIONS: We observed a significant proportion of patients reporting successful receipt of social services following engagement with an integrated CHW model. There are additional implementation factors that require further inquiry and research to understand barriers and enabling factors to integrate CHWs within clinical teams.