PPI in research: a reflection from early stage researchers

Biggane, Alice M; Olsen, Maria; Williamson, Paula

doi:10.1186/s40900-019-0170-2

Cited by 24 publications

(27 citation statements)

References 38 publications

(40 reference statements)

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“…This may encourage a wider range of individuals to get involved in PPI activities. However, some researchers may not see the value and feasibility of PPI [ 22 , 23 ]. Furthermore, researchers may be disinclined to try a novel approach if they feel daunted by the prospect of embedding PPI into their work, especially when resources to undertake this activity in a meaningful manner are lacking [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

Broadening diversity through creative involvement to identify research priorities

et al. 2021

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Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

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Section: Discussionmentioning

confidence: 99%

Broadening diversity through creative involvement to identify research priorities

et al. 2021

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“…This may encourage a wider range of individuals to get involved in PPI activities. However, there may still be the challenge of researchers seeing the value and feasibility of PPI [19][20].…”

Section: Discussionmentioning

confidence: 99%

“…We recruited young people through broad local advertisements and invitations via schoolteachers to students (at secondary school or college) to be part of the project. Two young amateur artists (E. Prior aged 17 and M.Viljoen aged 19) responded and worked with the team on this project. MV attended workshops in Bristol and Keele, whilst EP was at the Oxford workshop.…”

Section: Artists and Art Involvementmentioning

confidence: 99%

Broadening Diversity Through Creative Engagement in Research Prioritisation

Tierney¹,

Dawson²,

Boylan³

et al. 2020

Preprint

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Background: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We wanted to try out using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods: We contacted existing groups and organisations to reach people who are not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with mental health conditions, and c) from Black, Asian and Minority Ethnic backgrounds. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss the final pieces of art that were created, and the processes involved in their generation.Results: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) supporting discussion of women’s health issues in South Asian communities, c) information needs, anxiety/guilt around accessing care and costs associated with this for people with a mixture of physical and mental health conditions. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork has helped them to feel their voice has been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and then producing a study. Conclusions: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future public involvement and engagement, building on what we have learnt from the project described in this paper.

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“…The involvement of 'consumers and the community' or 'patients and the public' is increasingly recognised as important in healthcare decision making [14], as well as design and conduct of research [15][16][17] and setting of research priorities [18]. Consumer and community involvement ensures that research focuses on issues relevant to the public [19] and has been shown to have an impact at all stages of research [20].…”

Section: Consumer and Community Involvement In Health Researchmentioning

confidence: 99%

Evidence Review, Co-Production and Prototyping A Process of Creating a Consumer Research Contact List in a Paediatric Health Setting: The PARTICIPATE Project

Gill¹,

Pienaar²,

Jones³

2021

Preprint

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The impact of child health research can be far reaching; affecting children’s immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and community involvement is increasingly recognised as key to successful research recruitment. Systematic approaches to research recruitment include research registries or research contact lists. Objective: Develop a process of creating a consumer research contact list for participating in future research opportunities at a children’s health service.Methods: A healthcare improvement approach used a 3 stage framework; 1) evidence review and consultation 2) co-production of a research communications plan with stakeholders and consumers, including a draft research information brochure 3) prototyping involved iteratively testing the brochure, surveying parents or carers who attended outpatient clinics or the hospital Emergency Department, and conducting follow up telephone calls.Results: There was overall support for the creation of a research contact list, but some unknowns remain. 367 parents or carers completed the survey and 36 participated in a follow up telephone call. Over half were willing to join a research contact list and more than 90% of the children of parents or carers surveyed were not currently participating in research. Several potential barriers identified by stakeholders were dispelled. Research communications and a future contact list should be available in electronic form.Conclusions: There was strong support for creating a research contact list. The co‑production approach will inform our future directions including creation of an electronic research contact list easily accessible by consumers of the children’s health service

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PPI in research: a reflection from early stage researchers

Cited by 24 publications

References 38 publications

Broadening diversity through creative involvement to identify research priorities

Broadening diversity through creative involvement to identify research priorities

Broadening Diversity Through Creative Engagement in Research Prioritisation

Evidence Review, Co-Production and Prototyping A Process of Creating a Consumer Research Contact List in a Paediatric Health Setting: The PARTICIPATE Project

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