Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research

2021 ◽  
Author(s):  
Sally Crowe ◽  
Eleanor Barker ◽  
Meg Roberts ◽  
Lucy Lloyd ◽  
Clara M de Barros ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Healthcare Services ◽  
Healthcare Research ◽  
Rapid Review ◽  
Middle Income ◽  
Research Priority ◽  
Services Delivery ◽  
Research Themes ◽  
The Right

Abstract Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers. We carried out a rapid review of published research priority sets covering LGBTQ+ topics, and an online workshop. The rapid review identified 18 LGBTQ+ research priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five addressed transgender and gender non- conforming populations. All of the research priority sets originated from English-speaking, high and middle-income countries (UK, US, Canada, and Australia), and date from 2016 onwards. Prioritization approaches were wide-ranging from personal commentary to expert workshops and surveys. Participants involved in setting priorities mostly included research academics, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in this review were then grouped into themes which were prioritised during the workshop. For the workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert to a public involvement in research matching website to take part in an online discussion workshop. Those that took part were offered payment for their time in preparing for the workshop and taking part. Participants personal priorities and experiences contributed to a consensus development process and a final ranked list of seven research themes. Participants’ experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units added additional contexts. These ranged from living with neurodiversity, and disability as well as experiencing social and economic inequalities and multigenerational health issues. From the workshop the three research themes prioritised were: healthcare services delivery, prevention, and particular challenges /intersectionality of people identifying as lesbian, gay, bisexual, transgender or queer. Research themes interconnected in many ways and this was demonstrated by the comments from workshop participants. This paper offers insights into why these priorities were important from participants’ perspectives and detail about how to run an inclusive and respectful public involvement research exercise. The workshop outcomes are currently being used to inform research funding applications by CLS.

scholarly journals Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sally Crowe ◽  
Eleanor Barker ◽  
Meg Roberts ◽  
Lucy Lloyd ◽  
Clara M. de Barros ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Research Direction ◽  
Healthcare Services ◽  
Healthcare Research ◽  
Rapid Review ◽  
Future Research ◽  
Research Priority ◽  
Services Delivery ◽  
Research Themes

Abstract Background Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers. Methods Generally, to address this gap, and specifically, to inform future research for CLS, we carried out a rapid review of published research priority sets covering LGBTQ+ topics, and an online workshop to prioritise identified themes. Results Rapid review: results. The rapid review identified 18 LGBTQ+ research priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five addressed transgender and gender non- conforming populations. All of the research priority sets originated from English-speaking, high and middle-income countries (UK, US, Canada, and Australia), and date from 2016 onwards. Prioritization approaches were wide-ranging from personal commentary to expert workshops and surveys. Participants involved in setting priorities mostly included research academics, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in this review were then grouped into themes which were prioritised during the workshop. Workshop: results. For the workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert to a public involvement in research matching website to take part in an online discussion workshop. Those that took part were offered payment for their time in preparing for the workshop and taking part. Participants personal priorities and experiences contributed to a consensus development process and a final ranked list of seven research themes and participants’ experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units added additional context. Conclusions From the workshop the three research themes prioritised were: healthcare services delivery, prevention, and particular challenges / intersectionality of multiple challenges for people identifying as LGBTQ+. Research themes interconnected in many ways and this was demonstrated by the comments from workshop participants. This paper offers insights into why these priorities were important from participants’ perspectives and detail about how to run an inclusive and respectful public involvement research exercise. On a practical level these themes will directly inform future research direction for CLS.

Using patient and public involvement to identify priorities for research in long-term conditions management

2020 ◽  
Vol 29 (11) ◽  
pp. 612-617
Author(s):  
Sarah Brand ◽  
Louise Bramley ◽  
Eleanore Dring ◽  
Alison Musgrove
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Healthcare Research ◽  
Long Term Conditions ◽  
Research Themes ◽  
Fundamental Research ◽  
Experience Of Illness

Background: Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time. Aims: To obtain PPI in research-priority setting for a group with a special interest in LTC research. Discussion: PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities. Conclusion: It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.

scholarly journals Identifying integrated health services and social care research priorities in kidney disease in Wales: research prioritisation exercise

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e036872
Author(s):  
Leah Mc Laughlin ◽  
Susan Spence ◽  
Jane Noyes
Keyword(s):  
Kidney Disease ◽  
Health Services ◽  
Priority Setting ◽  
Social Care ◽  
Research Priorities ◽  
Social Contexts ◽  
Service Improvement ◽  
Research Priority ◽  
Services Delivery ◽  
Health And Social Care

ObjectivesTo identify the shared research priorities of patients, caregivers and multidisciplinary renal health and social care professionals across Wales for integrated renal health and social care in Wales.DesignResearch priority setting exercise adapted from the James Lind Alliance national priority setting partnership framework in UK healthcare.SettingTwo workshops: one in North Wales with patients, caregivers and multidisciplinary renal health and social care professionals and one in South Wales with the Welsh Renal Clinical Network (commissioners of renal services in Wales). Additional input provided from stakeholders via email correspondence and face to face communications.ParticipantsAcademics n=14, patients n=16, family/carers n=6, multidisciplinary renal healthcare professionals n=40, local authority councils n=3, renal charities n=6 wider third sector organisations n=8, renal industries n=4, Welsh government social care n=3, renal service commissioners n=8.Results38 research priority questions grouped into 10 themes were agreed. The themes included: (1) integrating health and social care, (2) education, (3) acute kidney injury, (4) chronic kidney disease and cardiovascular disease, (5) transplantation, (6) dialysis, (7) personalised medicines, (8) cross-cutting priorities, (9) specific social contexts and (10) transitional services and children. Research questions were broad and covered a range of health and social care topics. Patient and professional perspectives broadly overlapped. Research priority setting activities revealed gaps in knowledge in overall service provision and potential areas for service improvement.ConclusionsMapping priorities in health services and social care highlighted the research needed to support renal health services delivery and commissioning in Wales.

scholarly journals Sexually transmitted infection (STI) research priority-setting: a two-stage study including the perspectives of patients, the public, clinicians and stakeholders

2021 ◽  
pp. sextrans-2021-055054
Author(s):  
Hannah Louise Browne ◽  
Emily Clarke ◽  
Angela I Obasi
Keyword(s):  
Priority Setting ◽  
Public Involvement ◽  
Research Priorities ◽  
Public Understanding ◽  
Health Clinic ◽  
Rapid Diagnostics ◽  
Two Stage ◽  
Transmitted Infection ◽  
The Public ◽  
Research Priority

ObjectivesPatient and public involvement (PPI) in research priority-setting remains limited, especially for non-HIV STI. We identify and compare the top 10 patient and public STI research priorities with those of clinicians and STI stakeholders.MethodsThis two-stage study was conducted in May–August 2019. First, STI research priorities were canvassed through qualitative questionnaires issued to all patients attending a large sexual health clinic, all clinicians in region-wide mailing lists, all stakeholders identified through existing networks and the Charity Commission database, and to the Liverpool public. Raw responses were organised by theme into a shortlist of 25. In stage 2, these were ranked through priority-setting activities by telephone with patients and the public (n=8) and some clinicians (n=3), and in two workshops with clinicians (n=26) and stakeholders (n=5), respectively. The top 10 priorities were compared.ResultsOf 373 surveys submitted, 106 were analysed (83 patient and public; 23 clinician and stakeholder). Exclusions included lack of completion and responses out of scope. Among patient and public respondents, 55% (n=46) were aged 18–24 years, 51% (n=42) identified as heterosexual women and 23% (n=19) as men who have sex with men. Clinicians included all cadres; stakeholders were academics, commissioners and third sector representatives. In stage 2, 4 of 10 themes (STI education, targeted services for high-risk groups, antibiotic resistance and counselling for those with STI) were prioritised by all. Remote STI services and rapid diagnostics also ranked highly but the rationale differed between groups.ConclusionThis is the first non-HIV STI research priority-setting exercise to be reported in the UK. It identifies overlaps and differences between public and provider concerns, highlights gaps in the public understanding of STI research, and shows how PPI can promote research responsive to the concerns of both those who use and deliver services.

scholarly journals Involving service users to identify research priorities in a UK forensic mental health service

2020 ◽  
pp. 1-6
Author(s):  
Anne Aboaja ◽  
Bunny Forsyth ◽  
Helen Bates ◽  
Robert Wood
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Health Services ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Service Users ◽  
Two Phase ◽  
Research Themes ◽  
Mental Health Settings

Aims and method Patient and public involvement (PPI) is a priority for health research. PPI improves the relevance and quality of research. The study aimed to involve service users in identifying research priorities for the service. A two-phase adapted Delphi technique was used to generate a list of research topics from service users in secure in-patient mental health settings and on specialist mental health prison wings. Topic content analysis was undertaken. Service users were further consulted, and research themes were ranked in order of priority. Results Of the eight research themes identified, the three given the highest priority by service users were, in descending order, physical health, future plans and moving on, and causes of illness and crime. Clinical implications Service users are willing to be involved in setting research priorities for mental health services. Through non-tokenistic PPI, service users can uniquely shape the research agenda of mental health services.

Policy Review: Dubai Health Authority’s COVID-19 Rapid Response

2020 ◽  
Vol 5 (Special) ◽  
Keyword(s):  
United Arab Emirates ◽  
Well Being ◽  
Healthcare Services ◽  
Rapid Response ◽  
Policy Implications ◽  
World Health ◽  
Healthcare Sector ◽  
Services Delivery ◽  
First Case ◽  
The World

Dubai Health Authority (DHA) is the entity regulating the healthcare sector in the Emirate of Dubai, ensuring high quality and safe healthcare services delivery to the population. The World Health Organization (WHO) declared COVID-19 a pandemic on the 11th of March 2020, indicating to the world that further infection spread is very likely, and alerting countries that they should be ready for possible widespread community transmission. The first case of COVID-19 in the United Arab Emirates was confirmed on 29th of January 2020; since then, the number of cases has continued to grow exponentially. As of 8th of July 2020 (end of the day), 53,045 cases of coronavirus have been confirmed with a death toll of 327 cases. The UAE has conducted over 3,720,000 COVID-19 tests among UAE citizens and residents over the past four months, in line with the government’s plans to strengthen virus screening to contain the spread of COVID-19. There were vital UAE policies, laws, regulations, and decrees that have been announced for immediate implementation to limit the spread of COVID- 19, to prevent panic and to ensure the overall food, nutrition, and well-being are provided. The UAE is amongst the World’s Top 10 for COVID-19 Treatment Efficiency and in the World’s Top 20 for the implementation of COVID-19 Safety measures. The UAE’s mission is to work towards resuming life after COVID-19 and enter into the recovery phases. This policy research paper will discuss the Dubai Health Authority’s rapid response initiatives towards combating the control and spread of COVID-19 and future policy implications and recommendations. The underlying factors and policy options will be discussed in terms of governance, finance, and delivery.

Research for a sustainable European sugar sector

2010 ◽  
pp. 487-495
Author(s):  
Martin Bruhns ◽  
Peter Glaviè ◽  
Arne Sloth Jensen ◽  
Michael Narodoslawsky ◽  
Giorgio Pezzi ◽  
...  
Keyword(s):  
Sugar Industry ◽  
Research Priorities ◽  
Decision Makers ◽  
Sustainable Chemistry ◽  
Technology Platforms ◽  
Research Themes ◽  
Starting Point ◽  
Manufacturing Applications ◽  
European Technology

The paper is based on the results of international project entitled “Towards Sustainable Sugar Industry in Europe (TOSSIE)”. 33 research topics of major importance to the sugar sector are listed and briefly described, and compared with research priorities of the European Technology Platforms: “Food for Life”, “Sustainable Chemistry”, “Biofuels”, and “Plant for the Future”. Most topics are compatible with the research themes included in the COOPERATION part of the 7th Framework Program of the EU (2007-2013). However, some topics may require long-term R&D with the time horizon of up to 15 years. The list of topics is divided into four parts: Sugar manufacturing, Applications of biotechnology and biorefinery processing, Sugarbeet breeding and growing, Horizontal issues. Apart from possible use of the list by policy- and decision makers with an interest in sugarbeet sector, the description of each research topic can be used as a starting point in setting up a research project or other R&D activities.

Health research capacity in Nepal: Analysis of the trend and the role of local researchers

2021 ◽  
pp. 004947552098277
Author(s):  
Madhu Kharel ◽  
Alpha Pokharel ◽  
Krishna P Sapkota ◽  
Prasant V Shahi ◽  
Pratisha Shakya ◽  
...  
Keyword(s):  
Health Research ◽  
Fold Increase ◽  
Research Capacity ◽  
Rapid Review ◽  
Evidence Based ◽  
Middle Income ◽  
Middle Income Countries ◽  
Health Related ◽  
Evidence Based Decision Making

Evidence-based decision-making is less common in low- and middle-income countries where the research capacity remains low. Nepal, a lower-middle-income country in Asia, is not an exception. We conducted a rapid review to identify the trend of health research in Nepal and found more than seven-fold increase in the number of published health-related articles between 2000 and 2018. The proportion of articles with Nepalese researchers as the first authors has also risen over the years, though they are still only in two-thirds of the articles in 2018.

scholarly journals The kidney cancer research priority-setting partnership: Identifying the top 10 research priorities as defined by patients, caregivers, and expert clinicians

2017 ◽  
Vol 11 (12) ◽  
pp. 379-87 ◽  
Author(s):  
Jennifer Jones ◽  
Jaimin Bhatt ◽  
Jonathan Avery ◽  
Andreas Laupacis ◽  
Katherine Cowan ◽  
...  
Keyword(s):  
Cancer Research ◽  
Kidney Cancer ◽  
Priority Setting ◽  
Research Priorities ◽  
Research Network ◽  
Cancer Research Network ◽  
Research Priority ◽  
Funding Agencies ◽  
James Lind Alliance ◽  
Priority Setting Partnership

It is critically important to define disease-specific research priorities to better allocate limited resources. There is growing recognition of the value of involving patients and caregivers, as well as expert clinicians in this process. To our knowledge, this has not been done this way for kidney cancer. Using the transparent and inclusive process established by the James Lind Alliance, the Kidney Cancer Research Network of Canada (KCRNC) sponsored a collaborative consensus-based priority-setting partnership (PSP) to identify research priorities in the management of kidney cancer. The final result was identification of 10 research priorities for kidney cancer, which are discussed in the context of current initiatives and gaps in knowledge. This process provided a systematic and effective way to collaboratively establish research priorities with patients, caregivers, and clinicians, and provides a valuable resource for researchers and funding agencies.

scholarly journals Peer driven or driven peers? A rapid review of peer involvement of people who use drugs in HIV and harm reduction services in low- and middle-income countries

2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Judy Chang ◽  
Shaun Shelly ◽  
Machteld Busz ◽  
Claudia Stoicescu ◽  
Arif Rachman Iryawan ◽  
...  
Keyword(s):  
Harm Reduction ◽  
Resource Scarcity ◽  
Rapid Review ◽  
People Who Use Drugs ◽  
Financial Barriers ◽  
Community Knowledge ◽  
Middle Income ◽  
Peer Involvement ◽  
Stigma And Discrimination ◽  
Low And Middle Income

Abstract Introduction Peer involvement of people who use drugs within HIV and harm reduction services is widely promoted yet under-utilised. Alongside political and financial barriers is a limited understanding of the roles, impacts, contexts and mechanisms for peer involvement, particularly in low- and middle-income settings. We conducted a rapid review of available literature on this topic. Methods Within a community-academic partnership, we used a rapid review approach, framed by realist theory. We used a network search strategy, focused on core journals and reference lists of related reviews. Twenty-nine studies were included. We developed thematic summaries framed by a realist approach of exploring interventions, their mechanisms, outcomes and how they are shaped by contexts. Results Reported outcomes of peer involvement included reduced HIV incidence and prevalence; increased service access, acceptability and quality; changed risk behaviours; and reduced stigma and discrimination. Mechanisms via which these roles work were trust, personal commitment and empathy, using community knowledge and experience, as well as ‘bridge’ and ‘role model’ processes. Contexts of criminalisation, under-resourced health systems, and stigma and discrimination were found to shape these roles, their mechanisms and outcomes. Though contexts and mechanisms are little explored within the literature, we identified a common theme across contexts, mechanisms and outcomes. Peer outreach interventions work through trust, community knowledge and expertise, and ‘bridge’ mechanisms (M) to counter criminalisation and constraining clinic and service delivery environments (C), contributing towards changed drug-using behaviours, increased access, acceptability and quality of harm reduction services and decreased stigma and discrimination (O). Conclusion Peer involvement in HIV and harm reduction services in low- and middle-income settings is linked to positive health outcomes, shaped by contexts of criminalisation, stigma, and resource scarcity. However, peer involvement is under-theorised, particularly on how contexts shape mechanisms and ultimately outcomes. Efforts to study peer involvement need to develop theory and methods to evaluate the complex mechanisms and contexts that have influence. Finally, there is a need to expand the range of peer roles, to embrace the capacities and expertise of people who use drugs.

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