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

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.

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

Research Involvement and Engagement ◽

10.1186/s40900-021-00298-7 ◽

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.

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What matters to people with multiple long-term conditions and their carers?

Postgraduate Medical Journal ◽

10.1136/postgradmedj-2021-140825 ◽

2021 ◽

pp. postgradmedj-2021-140825

Author(s):

Gemma Spiers ◽

Elisabeth Boulton ◽

Lynne Corner ◽

Dawn Craig ◽

Stuart Parker ◽

...

Keyword(s):

Older People ◽

Public Involvement ◽

Research Priorities ◽

Well Being ◽

Future Research ◽

Long Term Conditions ◽

Ongoing Research ◽

Published Research ◽

What Matters

BackgroundThe number of people living with multiple long-term conditions is increasing worldwide. This presents challenges for health and care systems, which must adapt to meet the needs of this population. This study drew on existing data to understand what matters to people living with multiple long-term conditions and identify priorities for future research.MethodsTwo studies were conducted. (1) A secondary thematic analysis of interview, survey and workshop data collected from the 2017 James Lind Alliance Priority Setting Partnership for Older People with Multiple Conditions, and patient and public involvement workshops; (2) a review of ongoing research and published research priorities, relating to older people (80+) living with multiple long-term conditions.FindingsOlder people with multiple long-term conditions identified a number of key concerns: access to care, support for both the patient and their carer, physical and mental health and well-being and identifying opportunities for early prevention. The review identified no published research priorities or ongoing research focusing specifically on populations aged over 80 years with multiple long-term conditions.ConclusionOlder people living with multiple long-term conditions experience care that is inadequate for their needs. A holistic approach to care that extends beyond treating single conditions will ensure wide-ranging needs are met. As multimorbidity rises worldwide, this is a critical message for practitioners across health and care settings. We also recommend key areas that should be given greater focus in future research and policy to inform effective and meaningful forms of support for people living with multiple long-term conditions.

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

10.21203/rs.3.rs-501972/v1 ◽

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.

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Patient and public involvement in integrated psychosocial care

Journal of Integrated Care ◽

10.1108/jica-06-2019-0027 ◽

2019 ◽

Vol 28 (2) ◽

pp. 135-143

Author(s):

Io Vassiliadou ◽

Esther Tolani ◽

Lindsay Ip ◽

Abigail Smith ◽

Iliatha Papachristou Nadal

Keyword(s):

Mental Health ◽

Public Involvement ◽

Healthcare Professionals ◽

Psychosocial Care ◽

Patient And Public Involvement ◽

Service Users ◽

Long Term Conditions ◽

Improvement Project ◽

Content Type

Purpose Recent models of care incorporate service user involvement within the development and sustainability of a quality improvement project. The purpose of this paper is to demonstrate the significance of working with patients and members of the public for the integration of psychosocial care into long-term condition (LTC) management. Design/methodology/approach Research shows that mental health difficulties are more prevalent in people with LTC. The three Dimensions for Long-term Conditions (3DLC) is a patient-centred multidisciplinary service which integrates psychological and social care into the usual physical care. Thematic analysis was conducted on the discussions of the two patient and public involvement workshops that were facilitated by the service. The workshops included healthcare professionals, patients with LTC and their carers. Findings Several themes and subthemes emerged which highlighted the importance of discussing and treating mental health in a physical health setting, the challenges that both the patients and healthcare professionals encounter and the ways in which an integrated care service may address these barriers. The findings show that there was an emphasis on patient-centeredness, accessibility of services and the need for better communication. Practical implications People with LTC can be empowered to better self-manage their condition, whilst having access to all types of care, physical, social and psychological. By involving service users in the implementation process of the 3DLC service, the components of an effective integrated service are delineated. Originality/value The service users have identified barriers and facilitators of integrating a biopsychosocial model in care pathways. This has helped the 3DLC team to further develop the model to ensure improvements in condition-specific outcomes, quality of life and healthcare utilisation.

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Volunteer engagement to inform research on cardiovascular health awareness, Canada

Health Promotion International ◽

10.1093/heapro/daaa015 ◽

2020 ◽

Vol 35 (6) ◽

pp. 1570-1576 ◽

Cited By ~ 1

Author(s):

Marie-Thérèse Lussier ◽

Janusz Kaczorowski ◽

Magali Girard ◽

Emmanuelle Arpin

Keyword(s):

Data Collection ◽

Public Involvement ◽

Cardiovascular Health ◽

Research Priorities ◽

Research Process ◽

Patient And Public Involvement ◽

Valuable Insight ◽

Patient Needs ◽

Research Protocol ◽

Health Awareness

Abstract Volunteers have been extensively used in health promotion programmes. However, they have been less frequently involved in the research process. In its most recent iterations, the Cardiovascular Health Awareness Program (CHAP) integrated volunteers (i) to facilitate CHAP sessions with participating patients for data collection and (ii) to evaluate the intervention. Drawing on the patient and public involvement literature, our research team included volunteers in the data collection and evaluation of CHAP sessions as part of the programme’s implementation in the province of Quebec (Canada). We sought volunteers’ formal feedback through individual online and phone interviews and through focus groups for each of the four projects conducted in Quebec. We found that volunteers provide valuable insight on the research protocol as well as patient needs. Their feedback led to several modifications to the research protocol and procedures of subsequent CHAP sessions. Changes included involving volunteers at earlier stages of the research process, adding more learning modules and practice sessions during the volunteer training and defining research priorities according to patient needs. Our methodology of engaging volunteers in the research process was useful to gain important and unique insight on patient needs and for future programme planning to modify the research process.

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

BJPsych Bulletin ◽

10.1192/bjb.2020.131 ◽

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.

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Research for a sustainable European sugar sector

Sugar Industry ◽

10.36961/si10151 ◽

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.

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Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

Research Involvement and Engagement ◽

10.1186/s40900-021-00284-z ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Renske Visser ◽

Alyce-Ellen Barber ◽

Anthony X ◽

Sue Wheatcroft ◽

Philip Mullen ◽

...

Keyword(s):

Lived Experience ◽

Cancer Care ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Third Party ◽

Working Relationships ◽

Care Needs ◽

Academic Researchers ◽

No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

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THE STUDY OF AGING A SEARCH FOR MEANINGFUL PATIENT AND PUBLIC INVOLVEMENT IN GERONTOLOGICAL QUALITATIVE DATA ANALYSIS

Innovation in Aging ◽

10.1093/geroni/igz038.2953 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S802-S803

Author(s):

Barbara Hanratty ◽

Rachel Stocker ◽

Katie Brittain

Keyword(s):

Data Analysis ◽

Research Team ◽

Qualitative Data ◽

Public Involvement ◽

Long Term Care ◽

Patient And Public Involvement ◽

Term Care ◽

The Public ◽

Care Research

Abstract Patients and the public are involved in health and social care research more than ever before. Much effort has been put into developing patient and public involvement (PPI), and promoting co-production of research with patients and the public. Yet there is little guidance for researchers on how to involve PPI partners in the research process, or how involvement can be judged as meaningful. This presentation has its origins in the attempts of one research team to question and navigate a way of involving PPI in long term care research. In this presentation, we describe our model of collaborative qualitative data analysis with PPI partners, in a study exploring primary care services for older adults living in long-term care facilities in England. Anonymised interview transcript excerpts were presented in written, audio, and role-play format to our PPI partners. PPI partners derived meaning from interview data, identifying, confirming and critiquing emerging themes. Their input at this critical stage of the study deepened our initial analysis and prompted the research team to new and different interpretations of the data. This talk addresses ways of engaging PPI partners in innovative ways during data analysis, and offers other researchers some questions, challenges and potential principles for effective practice. We conclude that in areas such as long term care, with multiple stakeholders and a dynamic environment, effective PPI may be flexible, messy and difficult to define.

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