scholarly journals Volunteer engagement to inform research on cardiovascular health awareness, Canada

2020 ◽  
Vol 35 (6) ◽  
pp. 1570-1576 ◽  
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.

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

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.

scholarly journals A patient and public involvement investigation into healthy eating and weight management advice during pregnancy

2020 ◽  
Vol 32 (1) ◽  
pp. 28-34 ◽  
Author(s):  
J C Abayomi ◽  
M S Charnley ◽  
L Cassidy ◽  
M T Mccann ◽  
J Jones ◽  
...  
Keyword(s):  
Pregnant Women ◽  
Weight Management ◽  
Healthy Eating ◽  
Thematic Analysis ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Valuable Insight ◽  
Positive Health ◽  
Knowledge Support ◽  
Management Advice

Abstract Objective To conduct patient and public involvement (PPI) to gain insight into the experience of healthy eating and weight management advice during pregnancy. Design PPI in the planning and development of health interventions, aiming to ensure patient-centred care. Optimum nutrition and weight management are vital for successful pregnancy outcomes, yet many services report poor attendance and engagement. Setting Community venues in Liverpool and Ulster (UK). Participants Two PPI representatives were involved in all aspects of the study: design, interview questions, recruitment and collection/analysis of feedback. Intervention Feedback was collected via note taking during group discussions, two in Liverpool (n = 10 & 5); two in Ulster (n = 7 & 9) and an interview (n = 1, in Ulster). Main Outcome Measures Transcript data were collated and thematic analysis was applied in analysis. Results Thematic analysis identified three themes: (i) weight gain is inevitable in pregnancy; (ii) healthy eating advice is important but currently lacks consistency and depth and (iii) expectations regarding the type of knowledge/support. Conclusions PPI provides opportunity to enhance research design and offers valuable insight towards the needs of healthcare users. Pregnant women want positive health messages, with a focus on what they can/should do, rather than what they should not do. Midwives need to consider their communication with pregnant women, to ensure that their unique relationship is maintained, especially when the topics of diet and weight management are addressed. A well-designed digital intervention could improve access to pregnancy-specific nutrition information; empowering midwives to communicate patient-centred, healthy eating messages with confidence. This has the potential to change dietary and weight management behaviour in pregnant women.

scholarly journals Patient and Public Involvement in Identifying Dementia Research Priorities

2018 ◽  
Vol 66 (8) ◽  
pp. 1608-1612 ◽  
Author(s):  
Jennifer Bethell ◽  
Dorothy Pringle ◽  
Larry W. Chambers ◽  
Carole Cohen ◽  
Elana Commisso ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Dementia Research

scholarly journals Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

2020 ◽  
Vol 17 (21) ◽  
pp. 8048
Author(s):  
Miguel García-Martín ◽  
Carmen Amezcua-Prieto ◽  
Bassel H Al Wattar ◽  
Jan Stener Jørgensen ◽  
Aurora Bueno-Cavanillas ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Subjects ◽  
Societal Benefits ◽  
Participation Of Women ◽  
Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

scholarly journals Broadening diversity through creative involvement to identify research priorities

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
South Asian ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Condition ◽  
Physical And Mental Health ◽  
People With Dementia ◽  
Research Prioritisation ◽  
Condition C

Abstract 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.

scholarly journals How to engage patient partners in health service research: a scoping review protocol

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sarah Cecilie Tscherning ◽  
Hilary Louise Bekker ◽  
Tina Wang Vedelø ◽  
Jeanette Finderup ◽  
Lotte Ørneborg Rodkjær
Keyword(s):  
Health Service ◽  
Narrative Analysis ◽  
Scoping Review ◽  
Health Service Research ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Service Research ◽  
Review Protocol ◽  
The Impact

Abstract Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

scholarly journals Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e020452 ◽  
Author(s):  
Amy Price ◽  
Sara Schroter ◽  
Rosamund Snow ◽  
Melissa Hicks ◽  
Rebecca Harmston ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Papers ◽  
The Public ◽  
Reporting Requirements ◽  
Grant Applications ◽  
Before And After ◽  
Low Levels ◽  
Optional Extra

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published inThe BMJbefore and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014,The BMJpublished 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy,The BMJpublished 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction ofThe BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

scholarly journals Broadening Diversity Through Creative Engagement in Research Prioritisation

2020 ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
Mental Health ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Conditions ◽  
Physical And Mental Health ◽  
Mental Health Conditions ◽  
People With Dementia ◽  
Research Prioritisation

Abstract 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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