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How do third sector organisations or charities providing health and well-being services in England implement patient-reported outcome measures (PROMs)? A qualitative interview study.

ABSTRACT: OBJECTIVES:To identify the facilitators and barriers to implementing patient-reported outcome measures (PROMs) in third sector organisations (TSOs) delivering health and well-being services. DESIGN:A qualitative interview study. Participants were recruited using purposive, opportunistic and snowballing methods. Framework analysis was used. SETTING:TSOs including charities, community groups and not-for-profit organisations in England, UK. PARTICIPANTS:Thirty interviewees including service users, TSO front-line workers and managers, commissioners of TSOs and other stakeholders such as academic researchers. RESULTS:TSOs primarily used PROMs because of pressures arising from the external funding context. However, organisations often struggled to implement PROMs, rarely getting the process right first time. Facilitators for implementation included having an implementation lead committed to making it work, investing resources in data management systems and support staff and taking a collaborative approach to designing the PROMs process. The latter helped to ensure an appropriate PROMs process for the specific TSO including choosing a suitable measure and planning how data would be collected, processed and used. There was a dilemma about whether TSOs should use standardised well-being measures (eg, the Warwick-Edinburgh Mental Well-being Scale) or design their own PROM. Not all TSOs sustained the collection and reporting of PROMs over time because this required a change in organisational culture to view PROMs as beneficial for the TSO and PROMs becoming part of front-line workers' job specifications. CONCLUSIONS:TSOs are trying to use PROMs because they feel they have no choice but often struggle with implementation. Having an implementation lead, designing an appropriate process, investing resources, training staff and taking mitigating action to address potential barriers can facilitate implementation. Some of the findings are consistent with the experiences of more clinical services so appear relevant to the implementation of PROMs irrespective of the specific context.

SUBMITTER: Foster A

PROVIDER: S-EPMC7542936 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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How do third sector organisations or charities providing health and well-being services in England implement patient-reported outcome measures (PROMs)? A qualitative interview study.

Foster Alexis A O'Cathain Alicia A Harris Janet J

BMJ open 20201007 10

<h4>Objectives</h4>To identify the facilitators and barriers to implementing patient-reported outcome measures (PROMs) in third sector organisations (TSOs) delivering health and well-being services.<h4>Design</h4>A qualitative interview study. Participants were recruited using purposive, opportunistic and snowballing methods. Framework analysis was used.<h4>Setting</h4>TSOs including charities, community groups and not-for-profit organisations in England, UK.<h4>Participants</h4>Thirty interview ...[more]

PMID: 33033028

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Project description:BackgroundThird sector organisations such as charities and community groups are using Patient Reported Outcome Measures (PROMs) at an aggregated service level to demonstrate their impact to commissioners to generate or retain funding. Despite this motivation, organisations can struggle with implementing PROMs. Previous studies have identified facilitators including organisations using an appropriate measure, co-producing the PROMs process with staff, and investing resources to support the use of measures. However, to date no studies have applied this learning to third sector organisations to evaluate whether taking an evidence-informed implementation approach improves the use of PROMs.MethodsA Community-Based Participatory Research approach was used which involved university-based researchers supporting two third sector organisations to implement PROMs. The researchers provided evidence-informed advice and training. The organisations were responsible for implementing PROMs. The researchers evaluated implementation through a mixed methods approach including five key informant interviews, four evaluation groups and analysis of collected PROMs data (n = 313).ResultsBoth third sector organisations faced considerable constraints in incorporating known facilitators and addressing barriers. The organisations involved staff in choosing an acceptable measure. However, competing priorities including external pressures to use specific PROMs, busy workloads and staff opinions created challenges to using measures. Investment of time and energy into developing an outcomes-based organisational culture was key to enable the prioritisation of PROMs. For example, discussing PROMs in supervision so that they were viewed as part of people's job roles. Organisations found that implementation took several years and was disrupted by other pressures.ConclusionsWhilst organisations were motivated to implement PROMs to obtain or retain funding, they faced considerable practical and ideological challenges. Consequently, some stakeholders felt that alternative methods to measuring impact could potentially be more feasible than PROMs.

Project description:BackgroundThe third sector is becoming a growing provider of public, social, and health services. However, there is little evidence on the effectiveness of third sector organisations (TSOs), and their capacity to implement evidence-based interventions (EBIs). Understanding implementation aspects of service delivery remains an important issue in clinical practice, but is poorly understood in the context of TSOs. This is problematic, since implementation issues are known to be critical for effective intervention outcomes.ObjectivesTo identify and synthesise existing research on what barriers and facilitators influence the implementation process of TSOs delivering EBIs.MethodsThis review is reported according to PRISMA guidelines and was pre-registered in PROSPERO. Key databases were searched using relevant terms, experts in the field were contacted, and websites were reviewed. All identified studies were double-screened, and data were extracted independently by two authors. Included studies were synthesised using thematic analysis and were quality appraised.ResultsThirty-one studies were included, most of which were conducted in North America. The thematic synthesis identified resource limitations, in particular staff and finance, to be the most reported barrier to TSOs implementing EBIs. Organisational culture, including factors such as alignment between the mission of the TSO and EBI, and support/prioritisation of the implementation process were the most reported facilitators. These findings generalise across the included studies and are robust to study quality assessment.ConclusionsWhile it is often assumed that good outcomes follow when implementing interventions that have been developed and tested according to best practice, little attention has been paid to how EBIs are best transported, contextualised, and implemented by third sector providers. This systematic review found that TSOs faced considerable challenges in implementing EBIs, which were primarily a lack of support and expertise, and unclear/insufficient guidelines on how to adapt EBIs to different populations. To address these challenges, it is important to engage with central stakeholders, such as funders, researchers, policymakers, and practitioners, to discuss how these needs can be met.Trial registrationPROSPERO: CRD42017073090 .

Project description:IntroductionGiven the risks inherent in care transitions, it is imperative that patients discharged from hospital to home receive the integrated care services necessary to ensure a successful transition. Despite efforts by the healthcare sector to develop health system solutions to improve transitions, problems persist. Research on transitional support has predominantly focused on services delivered by healthcare professionals; the evidence for services provided by lay navigators or volunteers in this context has not been synthesised. This scoping review will map the available literature on the engagement of volunteers within third sector organisations supporting adults in the transition from hospital to home.Methods and analysisUsing the well-established scoping review methodology outlined by the Joanna Briggs Institute, a five-stage review is outlined: (1) determining the research question, (2) search strategy, (3) inclusion criteria, (4) data extraction and (5) analysis and presentation of the results. The search strategy will be applied to 10 databases reflecting empirical and grey literature. A two-stage screening process will be used to determine eligibility of articles. To be included in the review, articles must describe a community-based programme delivered by a third sector organisation that engages volunteers in the provisions of services that support adults transitioning from hospital to home. All articles will be independently assessed for eligibility, and data from eligible articles will be extracted and charted using a standardised form. Extracted data will be analysed using narrative and descriptive analyses.Ethics and disseminationEthics approval is not required for this scoping review. Members of an international special interest group focused on the voluntary sector will be consulted to provide insight and feedback on study findings, help with dissemination of the results and engage in the development of future research proposals. Dissemination activities will include peer-reviewed publications and academic presentations.

Project description:BACKGROUND:The third sector is becoming a more common provider of social and health services, but little is known about how third sector organisations (TSOs) evaluate their activities. Past research has reported that the third sector is under increasing pressure to evaluate its impact and performance by government and other commissioning bodies. However, in responding to this increased pressure to undertake evaluation, research suggests that many TSOs struggle to evaluate their activities following the principles of evidence-based practice (EBP). Yet, there has been no systematic effort to investigate why the third sector is struggling to provide good quality evidence of its effects. METHODS:This systematic review is reported following the PRISMA guidelines. Ten interdisciplinary databases were searched using a search string developed following best practice and in consultation with an information systems expert. Included studies were primary research of any research design investigating barriers to and facilitators of the evaluation process of TSOs as identified by practitioners. All studies were quality appraised, and the results were synthesised as a thematic summary. RESULTS:Twenty-four studies were included, which mainly investigated TSOs working within health and social services. The thematic summary identified the main barriers for TSOs to undertake evaluation to be related to the (1) lack of financial resources, (2) lack of technical capability and evaluation literacy and (3) challenges around identifying relevant evaluation systems and outcome indicators. Key facilitating factors involved (1) getting the appropriate support, (2) having an organisational culture that supports evaluation and (3) the motivation to be accountable to stakeholders. These findings were robust to study quality. CONCLUSIONS:This review constitutes the first systematic effort to synthesise existing literature on factors supporting and preventing evaluation by TSOs. The prevalence of factors revolving around the lack of support, resources and clarity on appropriate outcome indicators suggests that many of the identified challenges may be met by applying evidence-based and stakeholder-inclusive strategies to develop shared evaluation requirements. Future efforts should address the application of EBP as part of the commissioning process of TSOs.

Project description:BackgroundThe role played by regional organisations in climate change adaptation and health is growing in Southeast Asia, with the Asian Development Bank and the Asia-Pacific Regional Forum on Health and Environment both supporting health and adaptation initiatives. There is, however, a lack of empirical research on the value that regional organisations add to national health-related adaptation. This qualitative research compares regional project and governance-based models of adaptation and health support in Southeast Asia, providing an analysis of strengths and weaknesses of each, as well as possibilities for improvement.MethodsAn existing adaptation assessment framework was modified for this research, and used as a guide to gather and analyse data from academic and grey literature, policy documents and interviews in order to qualitatively assess two organisations and their different models of adaptation and health support.ResultsThis research found differing strengths in the approaches to climate change and health used by the Asian Development Bank and by the Asia-Pacific Regional Forum on Health and Environment. The regional forum has vision, high levels of perceived legitimacy, and access to 'in-house' expertise in public health and climate change. Conversely, the Asian Development Bank has strengths in project management and access to significant financial resources to support work in climate change and health.ConclusionWhen regional organisations, such as the Asian Development Bank and the Asia-Pacific Regional Forum on Health and Environment, have membership and mandate overlaps, their work will likely benefit from well designed, institutionalised and incentivised coordination mechanisms. Coordination can reduce redundancies as well as the administrative workload on partner government agencies. In the case-study examined, the Asian Development Bank's project management expertise complements the vision and high levels of perceived legitimacy of the Asia-Pacific Regional Forum on Health and Environment, thus a coordinated approach could deliver improved adaptation and health outcomes.

Project description:ObjectiveThis study examined how free-text comments from cancer survivors could complement formal patient-reported outcome measures (PROMs), as part of the England PROMs survey programme for cancer.DesignA qualitative content analysis was conducted of responses to a single open-ended free-text question placed at the end of the cross-sectional population-based postal questionnaire.SettingIndividuals were identified through three UK Cancer Registries and questionnaires were posted to their home addresses.ParticipantsA random sample of individuals (n=4992) diagnosed with breast, colorectal, non-Hodgkins lymphoma or prostate cancer at 1, 2, 3 and 5 years earlier.Results3300 participants completed the survey (68% response rate). Of these 1056 (32%) completed the free-text comments box, indicating a high level of commitment to provide written feedback on patient experience. Almost a fifth (19%) related experiences of excellent care during the treatment phase, with only 8% reporting negative experiences. This contrasted with experiences of care after primary cancer treatment where the majority were negative. Factors impacting negatively upon patient-reported outcomes included the emotional impact of cancer; poor experiences of treatment and care; comorbidities, treatment side effects, social difficulties and inadequate preparation for a wide range of sometimes long-lasting on-going physical and psychological problems. Mediating factors assisting recovery incorporated both professional-led factors, such as quality of preparation for anticipated problems and aftercare services, and participant-led factors, such as learning from other cancer survivors and self-learning through trial and error. The support of friends and family was also a factor in participants' outcomes.ConclusionsThis analysis of free-text comments complements quantitative analysis of PROMs measure's by illuminating relationships between factors that impact on quality of life (QoL) and indicate why cancer patients may experience significantly worse QoL than the general population. The data suggest more systematic preparation and aftercare for individuals to self-manage post-treatment problems might improve QoL outcomes among cancer survivors.

Dataset Information

How do third sector organisations or charities providing health and well-being services in England implement patient-reported outcome measures (PROMs)? A qualitative interview study.

Publications

How do third sector organisations or charities providing health and well-being services in England implement patient-reported outcome measures (PROMs)? A qualitative interview study.

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