How to strengthen societal impact of research and innovation? Lessons learned from an explanatory research-on-research study on participatory knowledge infrastructures funded by the Netherlands Organization for Health Research and Development.

BACKGROUND: Scientific research and innovation can generate societal impact via different pathways. Productive interactions, such as collaboration between researchers and relevant stakeholders, play an important role and have increasingly gained interest of health funders around the globe. What works, how and why in research partnerships to generate societal impact in terms of knowledge utilisation is still not well-known. To explore these issues, the Netherlands Organization for Health Research and Development (ZonMw) initiated an exploratory research-on-research study with a focus on participatory knowledge infrastructures (PKIs) that they fund in the field of public health and healthcare. PKIs are sustainable infrastructures in which knowledge production, dissemination and utilisation takes place via committed collaboration between researchers and stakeholders from policy, practice and/or education. Examples are learning networks, academic collaborative centres, care networks and living labs. The aim of the study was twofold: to gain insights in what constitutes effective collaboration in PKIs; and to learn and improve the research governance, particularly of ZonMw as part of their dissemination and implementation activities. METHODS: During 2020-2022, we conducted a literature review on long-term research partnerships, analysed available documentation of twenty ZonMw-funded PKIs, surveyed participants of the 2021 European Implementation Event, interviewed steering committee members, organized a Group Decision Room with lecturers, and validated the findings with key experts. RESULTS: We identified eight mechanisms ('how and why') that are conditional for effective collaboration in PKIs: transdisciplinary collaboration; defining a shared ambition; doing justice to everyone's interests; investing in personal relationships; a professional organisation or structure; a meaningful collaborative process; mutual trust, sufficient time for and continuity of collaboration. Several factors ('what') may hinder (e.g., lack of ownership or structural funding) or facilitate (e.g., stakeholder commitment, embeddedness in an organisation or policy) effective collaboration in research partnerships. CONCLUSION: To use the study results in policy, practice, education, and/or (further) research, cultural and behavioural change of all stakeholders is needed. To facilitate this, we provide recommendations for funding organisations, particularly ZonMw and its partners within the relevant knowledge ecosystem. It is meant as a roadmap towards the realisation and demonstration of societal impact of (health) research and innovation in the upcoming years.

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique.

BACKGROUND: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. METHODS: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. RESULTS: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. CONCLUSION: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research.

Engaging primary care professionals in OECD's international PaRIS survey: a documentary analysis.

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities-how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals.

Conducting Research at the Intersection of HCI and Health: Building and Supporting Teams with Diverse Expertise to Increase Public Health Impact.

Research at the intersection of human-computer interaction (HCI) and health is increasingly done by collaborative cross-disciplinary teams. The need for cross-disciplinary teams arises from the interdisciplinary nature of the work itself-with the need for expertise in a health discipline, experimental design, statistics, and computer science, in addition to HCI. This work can also increase innovation, transfer of knowledge across fields, and have a higher impact on communities. To succeed at a collaborative project, researchers must effectively form and maintain a team that has the right expertise, integrate research perspectives and work practices, align individual and team goals, and secure funding to support the research. However, successfully operating as a team has been challenging for HCI researchers, and can be limited due to a lack of training, shared vocabularies, lack of institutional incentives, support from funding agencies, and more; which significantly inhibits their impact. This workshop aims to draw on the wealth of individual experiences in health project team collaboration across the CHI community and beyond. By bringing together different stakeholders involved in HCI health research, together, we will identify needs experienced during interdisciplinary HCI and health collaborations. We will identify existing practices and success stories for supporting team collaboration and increasing HCI capacity in health research. We aim for participants to leave our workshop with a toolbox of methods to tackle future team challenges, a community of peers who can strive for more effective teamwork, and feeling positioned to make the health impact they wish to see through their work.

Toward the European Health Data Space: The IMPaCT-Data secure infrastructure for EHR-based precision medicine research.

BACKGROUND: Art. 50 of the proposal for a Regulation on the European Health Data Space (EHDS) states that "health data access bodies shall provide access to electronic health data only through a secure processing environment, with technical and organizational measures and security and interoperability requirements". OBJECTIVE: To identify specific security measures that nodes participating in health data spaces shall implement based on the results of the IMPaCT-Data project, whose goal is to facilitate the exchange of electronic health records (EHR) between public entities based in Spain and the secondary use of this information for precision medicine research in compliance with the General Data Protection Regulation (GDPR). DATA AND METHODS: This article presents an analysis of 24 out of a list of 72 security measures identified in the Spanish National Security Scheme (ENS) and adopted by members of the federated data infrastructure developed during the IMPaCT-Data project. RESULTS: The IMPaCT-Data case helps clarify roles and responsibilities of entities willing to participate in the EHDS by reconciling technical system notions with the legal terminology. Most relevant security measures for Data Space Gatekeepers, Enablers and Prosumers are identified and explained. CONCLUSION: The EHDS can only be viable as long as the fiduciary duty of care of public health authorities is preserved; this implies that the secondary use of personal data shall contribute to the public interest and/or to protect the vital interests of the data subjects. This condition can only be met if all nodes participating in a health data space adopt the appropriate organizational and technical security measures necessary to fulfill their role.

Community led health promotion to counter stigma and increase trust amongst priority populations: lessons from the 2022-2023 UK mpox outbreak.

BACKGROUND: Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox, for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer and men who have sex with men (MSM). This study explored stigma and health-seeking behaviour in Liverpool through the lens of the recent mpox outbreak. METHODS: Primary sources of data were interviews with national and regional key informants involved in the mpox response, and participatory workshops with priority populations. Workshop recruitment targeted Grindr users (geosocial dating/hookup app) and at risk MSM; immigrant, black and ethnic minority MSM; and male sex workers in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework. RESULTS: Key informant interviews (n = 11) and five workshops (n = 15) were conducted. There were prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ + community, the third sector, and local sexual health clinics. Key informants from the LGBTQ + community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing; a reliance on goodwill; poor communication; and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities. CONCLUSIONS: The LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health seeking behaviour during the 2022-2023 UK mpox outbreak. Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities.

Understanding and Defining Young People's Involvement and Under-Representation in Mental Health Research: A Delphi Study.

INTRODUCTION: The mental health of young people (aged 16-25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under-representation' in young people's involvement in mental health research. METHODS: Twenty-seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under-representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. RESULTS: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed-upon definition of under-representation, an identification of when in the research process there is under-representation and the characteristics of the young people who are under-represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. CONCLUSIONS: This study adds to our understanding of involvement and under-representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. PATIENT AND PUBLIC CONTRIBUTION: A research oversight group of five young people advised on this study. They contributed throughout the project-from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire.

Defending and Defining Environmental Responsibilities for the Health Research Sector.

Six planetary boundaries have already been exceeded, including climate change, loss of biodiversity, chemical pollution, and land-system change. The health research sector contributes to the environmental crisis we are facing, though to a lesser extent than healthcare or agriculture sectors. It could take steps to reduce its environmental impact but generally has not done so, even as the planetary emergency worsens. So far, the normative case for why the health research sector should rectify that failure has not been made. This paper argues strong philosophical grounds, derived from theories of health and social justice, exist to support the claim that the sector has a duty to avoid or minimise causing or contributing to ecological harms that threaten human health or worsen health inequity. The paper next develops ideas about the duty's content, explaining why it should entail more than reducing carbon emissions, and considers what limits might be placed on the duty.

Combating Fraudulent Participation in Urban American Indian and Alaska Native Virtual Health Research: Protocol for Increasing Data Integrity in Online Research (PRIOR).

BACKGROUND: While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to "troll" research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. OBJECTIVE: Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. METHODS: From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants' identifying information. RESULTS: Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. CONCLUSIONS: Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. TRIAL REGISTRATION: ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52281.

Gender(ed) science: How the institutionalization of gender continues to shape the conduct and content of women's health research.

Gender refers to the socially constructed roles, behaviors, and attributes that a particular society considers appropriate for men and women based on assumptions about biological sex. It also operates as a major social organizing principle that confers unequal power, status, and resources to men and women, with direct consequences for health. Historic patriarchal and misogynistic beliefs and values are reinforced through social institutions, including health science, which reify gender inequities. This commentary examines two key domains in which the social organization and institutionalization of gender in scientific research affect the conduct of women's health research and, by extension, women's health outcomes. These domains are: 1) decisions about which topics are prioritized, researched, and funded and 2) the dissemination of research findings. Using the National Institutes of Health (NIH) as a case study to illustrate broader patterns in scientific research, we present evidence of gender-based inequities in what is prioritized, deemed fundable, and disseminated, and how this affects knowledge production and attention to women's health. We highlight efforts and progress made by the NIH and call for additional attention to further address gender-based inequities and their impact on women's health research. We conclude with a call for critical social science analyses-ideally supported by the NIH-of the social organization of health science research to identify points of intervention for redressing deep-seated obstacles to advancing research on women's health.

The White House Initiative on Women's Health Research: A Presidential Boost.

Women's Health Research, barely 40-year-old in the United States has recently received an all-important boost from First Lady Jill Biden. The $100 million in question are bound to make a meaningful difference in this all-important arena. It was the view of the White House that "our nation must fundamentally change how we approach and fund women's health research." The White House expressed its hope that "congressional leaders, the private sector, research institutions, and philanthropy" will answer the call to "improve the health and lives of women throughout the nation."

NIHR Race Equality Framework: development of a tool for addressing racial equality in public involvement.

BACKGROUND: While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to address racial equality in public involvement. This paper describes how the UK's National Institute for Health and Care Research (NIHR) convened a Race Equality Public Action Group (REPAG), which co-developed with public contributors and stakeholders a Race Equality Framework - a tool for addressing racial equality in public involvement. METHODS: The REPAG, through meetings and discussions, defined the focus of the Framework, and developed an initial draft of the Framework. Public contributors identified the need for broader consultation with other public members. Three community consultation events with a total of 59 members of Black African-, Asian- and Caribbean-heritage communities were held to seek their views on health and care research generally and on the draft Framework specifically. The draft Framework was modified and piloted among 16 organisations delivering health and care research. Following feedback from the pilot, the Framework was modified and prepared for publication. RESULTS: The Framework is designed as a self-assessment tool comprised of 50 questions pertaining to five domains of organisational activity: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions were co-designed with REPAG public members and provide key concepts and elements of good practice that organisations should consider and address on their path to achieving racial competence. The accompanying materials provide implementation guidance with 20 detailed steps, case studies of actions taken in seven pilot organisations, and links to additional resources. The pilot demonstrated the feasibility of conducting a meaningful self-assessment over a period of three months and the usefulness of the results for developing longer-term action plans. CONCLUSION: The Framework represents the first self-assessment tool for addressing racial equality in public involvement. Co-design with REPAG public members enhanced its authenticity and practicality. Organisations in the field of health and care research and any other organisations that use partnerships with the public are encouraged to adopt the Framework.

For a long time, race equality within research has not been a priority. To address this the NIHR created a group to come up with solutions to tackle this ­ the Race Equality Public Action Group. Recognising the need to help research organisations with how they involved members of the public from diverse groups, the Race Equality Framework was born. The Race Equality Framework was devised to help organisations become more inclusive, develop better links with diverse communities and make their work more equitable.Consultation with members of the public from Black African-, Asian- and Caribbean-heritage communities were held and were essential in developing the Framework. Sixteen organisations who are involved in health and care research were recruited as pilot partners. They worked through the Framework and provided further feedback and input.The final product is a self-assessment tool which comprises of 50 questions across five domains. These domains are: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions are designed to promote reflection and improve organisational good practice.This is the first tool of its kind, and we recommend its use for health and care research organisations that work closely and develop partnerships with members of the public.

Parental perspectives on Children's lifestyles: A Path for school health promotion.

The National School Health Program in Portugal advocates for healthy lifestyles. However, school health teams mostly focus their activities on educating children, whereas it is the families who are primarily responsible for managing children's lifestyles. Although the programme proposes interactive health education activities, such as meetings with the children's families, few parents participate in these activities. The project Gostar de Mim was created to bridge this gap by promoting healthy family lifestyles in school settings. The project used an evaluating instrument called the 'Parents' Booklet' packed with information. This study assessed the usefulness of the booklet in providing health information and planning family engagement. Based on the PRECEDE-PROCEED framework (PRECEDE: Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation; PROCEED: Policy, Regulatory, and Organizational Constructs in Educational and Environmental Development), this article focuses on the social and epidemiological assessment phases. We examined the health surveillance status of children aged 6-10 years (epidemiological phase) and description of health behaviours in different lifestyle dimensions (behavioural and environmental phase). The Parents' Booklet was used to identify parents' perspectives on their children's lifestyles. Data analysis of 568 Parents' Booklet (23 schools) use cases showed that the lifestyle priorities, in order, were 'sleep and rest' (95.6 %), 'energy balance' (100 %), 'oral/body healthcare' (95.6 %), 'alcohol, tobacco/other drugs' (73.9 %), 'consumerism' (91.3 %), 'leisure-time occupation' (91.3 %), and 'literacy and satisfaction at school' (86.9 %). Clearly, the Parents' Booklet was useful, as it made it possible to obtain information that allowed for participatory school health diagnosis and can guide community nursing actions that need to be developed in schools. Crucially, this tool can be useful for parents, enabling them to be more aware of their children's lifestyle via self-monitoring as well as increasing their participation in health education.

United Kingdom oral and maxillofacial surgeons support changes to current specialty recruitment process, which could include 'Walport' style local selection and national benchmarking.

Recruitment to oral and maxillofacial Surgical (OMFS) specialty training was centralised in 2010. The 'flexibility' for OMFS to respond to specialty specific recruitment issues is reducing and many Specialty Trainees' (ST) posts are left unfilled. The National Institute for Health and Care Research (NIHR) appointment process designed to address the problem of recruiting and appointing academic surgeons with local selection with national benchmarking has worked. Using a database of all UK OMFS consultants/trainees, an electronic questionnaire was shared by e-mail, WhatsApp, and other social media. Of 306 replies, 125 (41%) were Consultants/post-certificate of completion training (CCT) individuals, 66 (22%) ST, 61 (20%) second degree students, 27 (9%) pre-second degree, 26 (9%) dual degree pre-ST trainees, and one did not indicate their status. A total of 249 (76%) studied dentistry first and 230 (75%) were male. Of those replying, 147 (48%) had no direct experience of national selection. 120 (39%) had experience as a candidate, 20 (7%) as a selector only, 17 (6%) as a candidate and selector, and two did not record their experience. Of 250 expressing an opinion, 156 (62%) supported local selection with 140 (56%) supporting local selection and national benchmarking, which is a process used for research training posts by the NIHR. Geographical continuity was most important for 78% of pre-second-degree trainees, 45% of STs, and 54% of second-degree students. A total of 57 respondents completed free text comments. There is support for changes in OMFS ST selection including creating OMFS posts which include Foundation and second-degree training in NIHR style locally recruited nationally benchmarked posts.

A comparison of content from across contemporary Australian population health surveys.

OBJECTIVE: Associations between place and population health are of interest to researchers and policymakers. The objective of this paper is to explore, summarise and compare content across contemporary Australian geo-referenced population health survey data sets. METHODS: A search for recent (2015 or later) population health surveys from within Australia containing geographic information from participants was conducted. Survey response frames were analysed and categorised based on demographic, risk factor and disease-related characteristics. Analysis using interactive Sankey diagrams shows the extent of content overlap and differences between population health surveys in Australia. RESULTS: Thirteen Australian geo-referenced population health survey data sets were identified. Information captured across surveys was inconsistent as was the spatial granularity of respondent information. Health and demographic features most frequently captured were symptoms, signs and clinical findings from the International Statistical Classification of Diseases and Related Health Problems version 11, employment, housing, income, self-rated health and risk factors, including alcohol consumption, diet, medical treatments, physical activity and weight-related questions. Sankey diagrams were deployed online for use by public health researchers. CONCLUSIONS: Identifying the relationship between place and health in Australia is made more difficult by inconsistencies in information collected across surveys deployed in different regions in Australia. IMPLICATIONS FOR PUBLIC HEALTH: Public health research investigating place and health involves a vast and inconsistent patchwork of information within and across states, which may impact broad-scale research questions. The tools developed here assist public health researchers to identify surveys suitable for their research queries related to place and health.

Opportunities to improve feedback to reduce blood component wastage: Results of a national scheme evaluation.

BACKGROUND: Blood components are costly and scarce. The Blood Stocks Management Scheme (BSMS) was established in the United Kingdom (UK) to support hospital transfusion services and national blood services through collection, analysis, and monthly feedback of data on blood component inventory and wastage management. There is a growing evidence base on how best to deliver feedback for quality improvement. We assessed the quality and utility of the monthly BSMS component reports. METHODS: We assessed the content of BSMS reports issued in March 2023 against established criteria for effective feedback. Two researchers independently rated whether criteria spanning the five domains of goal setting, data collection, feedback content, feedback display and feedback delivery were fully, partially or not met. Disagreements were resolved through discussion. We conducted an online questionnaire survey of recipients of BSMS reports during March 2023 to assess their use of reports and seek suggestions for improvement. RESULTS: Five out of 20 criteria for effective feedback were fully met. Areas for improvement included placing more emphasis in the feedback on positive change, linking data and summary messages, and including specific suggestions for action. Respondents highlighted the value of benchmarked comparisons with other hospital transfusion services. CONCLUSION: There is scope for enhancing the effectiveness and utility of BSMS feedback reports and hence reducing wastage of blood components. This methodology for evaluation of feedback could be utilized to improve other areas of transfusion practice.

IRB challenges in multisite studies: A case report and commentary from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

A shift from single to multi-site health studies enabled a range of research benefits including faster recruitment of larger and more diverse samples; increased statistical power, greater rigour, generalisability, and external reliability; and increased likelihood of impacting policy and clinical practice. However, ethical review of multi-site studies by Institutional Review Boards (IRBs) raises specific challenges compared with single site studies, with requirements to apply to multiple local IRBs increasing the burden on research, possibly endangering the integrity of the research process or inhibiting development of multi-site studies. The option of a single centralised IRB may offer a clearer, more consistent and efficient review process. This study presents a case report and commentary from 15 years engaging with IRBs in multiple sites in Ireland by the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). It examines the ethics review process for IDS-TILDA through its first four waves. While the majority of 48 IRBs granted ethical approval within 13 weeks, six IRBs took 21-47 weeks to approve, leading to delays in data collection of up to 11 months. Despite additional review time, no changes were required to the study protocol. Therefore, a critical impact of the process was the delay in starting data collection within a small number of organisations, and reduced involvement in the study for one organisation. The ethical review process with multiple IRBs increased the degree of complexity of the process, with added bureaucracy and far greater communication required across 48 IRBs, substantially adding to the resource commitment for the review process. The relatively quick approval from the majority of IRBs was partially a result of the longitudinal study building relationships with organisations throughout multiple waves. That other health studies may not accrue this benefit supports calls for a single IRB system for multi-site health studies.

COVID-19 Implications on Worksite Wellness Programming.

Seven of the top ten leading causes of death in the United States are due to chronic diseases and treating these accounts for 86 percent of our nation's health care costs. The workplace offers an environment to implement chronic disease prevention strategies, such as worksite wellness programs, due to the large amount of time spent at the worksite daily by employees. As a result of COVID-19, many organizations began to change their workdays (i.e., working from home). This research sought to understand what, if any, implications the COVID-19 epidemic had on worksite wellness programming. Semistructured interviews were employed and recorded via Zoom conferencing to gather qualitative data. Four themes were identified: (a) relationship building among remote employees, (b) creativity in how to carry out program components, (c) increased physical activity and work-life balance, and (d) increased knowledge of health issues and mental health resources. Both challenges and successes were reported within themes. The main finding from this research indicates a mostly positive experience for worksite wellness programs during the COVID-19 epidemic. Many organizations have continued nontraditional work environments and the lessons learned from this study can both encourage and provide ideas for how to create and continue a worksite wellness program outside of the normal face-to-face working environment.

Identifying potentially low value surgical care: A national ecological study in England.

OBJECTIVES: High variation in clinical practice may indicate uncertainty and potentially low-value care. Methods to identify low value care are often not well defined or transparent and can be time intensive. In this paper we explore the usefulness of variation analysis of routinely-collected data about surgical procedures in England to identify potentially low-value surgical care. METHODS: This is a national ecological study using Hospital Episode Statistics linked to mid-year population estimates and indices of multiple deprivation in England, 2014/15-2018/19. We identified the top 5% of surgical procedures in terms of growth in standardised procedure rates for 2014/15 to 2018/19 and variation in procedure rates between clinical commissioning groups as measured by the systematic component of variance (SCV). A targeted literature review was conducted to explore the evidence for each of the identified techniques. Procedures without evidence of cost-effectiveness were viewed as of potentially low value. RESULTS: We identified six surgical procedures that had a high growth rate of 37% or more over 5 years, and four with higher geographical variation (SCV >1.6). There was evidence for two of the 10 procedures that surgery was more cost-effective than non-surgical treatment albeit with uncertainty around optimal surgical technique. The evidence base for eight procedures was less clear cut, with uncertainty around clinical- and/or cost-effectiveness. These were: deep brain stimulation; removing the prostate; surgical spine procedures; a procedure to alleviate pain in the spine; surgery for dislocated joints due to trauma and associated surgery for traumatic fractures; hip joint replacement with cemented pelvic component or cemented femoral component; and shoulder joint replacement. CONCLUSIONS: This study demonstrates that variation analysis could be regularly used to identify potentially low-value procedures. This can provide important insights into optimising services and the potential de-adoption of costly interventions and treatments that do not benefit patients and the health system more widely. Early identification of potentially low value care can inform prioritisation of clinical trials to generate evidence on effectiveness and cost-effectiveness before treatments become established in clinical practice.