Patient advocates respond to ‘Utilizing Patient Advocates…’ by Feeney et al

Riggare, Sara; Stecher, Benjamin; Stamford, Jonathan A.

doi:10.1111/hex.13087

Cited by 6 publications

(7 citation statements)

References 11 publications

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“…For subsequent interview rounds, programme members (researchers and patient innovators) have been invited to contribute with adjustments to the interview guide. The importance of clarifying patient and public contributions in the research process, and as coauthors, has been emphasized in the community of patient advocates 53,54 . To assess the transferability of our findings to other settings, careful consideration of the context is required.…”

Section: Discussionmentioning

confidence: 99%

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

Wannheden

Riggare

Luckhaus

et al. 2023

Health Expectations

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Background Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.

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Section: Discussionmentioning

confidence: 99%

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

Wannheden

Riggare

Luckhaus

et al. 2023

Health Expectations

Self Cite

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“…The increased expectation to involve the public in research is supported by Fleming and Boeck, who noted research should directly reflect the personal priorities, concerns and therefore the actual needs of CYP [19]. Riggare et al described PPI participants as patient advocates having experiential knowledge of their condition and should thus be treated with the same regard as other experts in their field [20,21].…”

Section: Definition and Theoretical Underpinningsmentioning

confidence: 99%

“A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

Abrehart¹,

Frost

Harris

et al. 2021

Res Involv Engagem

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Background There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concerning medical devices aimed at children and young people (CYP). Although involvement methodology has developed over the last two decades, it can be challenging to involve and engage CYP with confidence and clarity of purpose. Main body Our aim was to provide a reflective narrative account of the involvement of CYP, over a period of 5 years, in a research project from conception of a new paediatric medical device through to practical application. We explored a model of patient and public involvement (PPI) through the Nottingham Young Persons Advisory Group (YPAG), part of the National Institute for Health Research (NIHR) GenerationR Alliance, in a NIHR funded research project. The YPAG designed and created a model of the human gut, co-designed the Transicap™ mini-capsules and their packaging, co-produced patient information sheets, came up with the idea to disseminate through a project website and co-wrote and created animation videos. The YPAG involvement continued through the writing and award of the follow-on research grant (MAGIC2). During this process the YPAG modified the clinical study protocol insisting that all participants in the control arm were given the imaging test results as well, save for a delayed reading compared to the intervention arm. Conclusion Involvement of the YPAG over the last 5 years, led to the development of a mutually beneficial partnership, enabling genuine knowledge exchange between researchers and CYP. This influenced the design, plans and actions of the MAGIC study and well into the subsequent MAGIC2 follow-on project. Moreover, these involvement models applied within a feasibility study setting, have enhanced the realism and pragmatism of the study, contributing to the project’s overall success.

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“…There is a tension between its intrinsic value, reflecting a democratic approach of fairness, transparency and accountability (‘nothing about us without us’ 14 ) and an instrumental approach referring to patient engagement as a means to improving the quality of research 15 . Indeed, some argue that patient engagement cannot be seen as an intervention to be evaluated, but that it is a prerequisite for a people‐centred health‐care system 16 . Patient engagement may best be described as a process of knowledge exchange needed to better integrate patient perspectives, needs and priorities 17 rather than a typical intervention, which requires a different evaluation approach.…”

Section: Introductionmentioning

confidence: 99%

“…15 Indeed, some argue that patient engagement cannot be seen as an intervention to be evaluated, but that it is a prerequisite for a people-centred health-care system. 16 Patient engagement may best be described as a process of knowledge exchange needed to better integrate patient perspectives, needs and priorities 17 rather than a typical intervention, which requires a different evaluation approach.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

Vat

Finlay

Robinson

et al. 2021

Health Expectations

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Background Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision‐making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. Methods A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi‐phase participatory process, including analysis of its application in 24 cases. Results The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision‐making contextual factors. Case study findings show a wide variation in use of metrics. There is no ‘one size fits all’ set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. Conclusion Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. Patient contribution Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.

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Patient advocates respond to ‘Utilizing Patient Advocates…’ by Feeney et al

Abstract: We read with interest the recent article by Feeney and colleagues on 'utilizing (sic) patient advocates in Parkinson's disease'.

Cited by 6 publications

References 11 publications

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

“A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

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