|Reference #||Benefits of patient involvement||Risks of patient involvement|
|For patients||For others||For the project||For patients||For others||For the project|
Absolom et al.
|Feel that contribution is valued and actioned; gain new skills and knowledge of the research process; opportunity to use transferrable skills; increased confidence as a patient representative||Enrich researcher understanding of the topic; learn how to tailor projects around patients’ availability, health status and interest||Patients raised new issues, such as sensitive data management and cultural diversity; patients asked questions that produced useful discussion||May initially feel daunted by experienced researchers and clinicians; time needed to get to grips with complex information||Time investment to brief patients before meetings||Patient withdrawal due to ill health can produce team gaps and make it challenging to sustain a volunteer-run committee in the longer term|
Pollard et al.
|Improved confidence and skills, including facilitation, handwriting and speaking; feel supported by having an academic researcher dedicated to evaluating the patient experience||Gain insight that early planning and consistent guideline use around enhancing patient involvement are important; gain greater awareness of challenges such as meetings and events timing, accessibility and communication||Stakeholder diversity in meetings (academics, practitioners and patients)||Physical challenges of involvement, such as fatigue, difficulty speaking and difficulty writing; patients may not feel confident, or may have difficulty capturing the group’s attention; logistical challenges, such organizing transport to and from meetings||Other stakeholders may be cautious of patient involvement||Need to structure projects to address patients’ needs (e.g. fatigue, mobility and communication concerns)|
Hyde et al.
|Opportunity to input into study design, results reporting and dissemination plan; ensure that patient priorities are directly reflected in the research; patients plan their own roles including content review, attending and giving presentations and contributing their perspective at conferences; involvement is valued and non-tokenistic||Support in identifying new research topics; reassurance that patients identified similar ideas (validity of input) and new ideas (innovative input) to researchers; develop strategies to help manage patient involvement challenges and establish best practice||Help ensure that the project is funded; refinement of the project scope by identifying gaps in the published literature; results interpretation and the dissemination plan more clearly reflect patient priorities||Navigation of time pressures and power dynamics; no evaluation of the experience of the patients themselves||Navigation of time pressures and power dynamics||Best practice recommendations not validated by assessment of patient experiences; patient insights may not be fully representative, as the patient group was non-diverse and carers and stakeholder organizations were not involved; potential for introducing research bias|
Mann et al.
|Enjoy being part of a group; gain confidence and freedom to challenge researchers; learn listening skills and how to share views; training opportunities; sense of ownership towards the trial; feel listened to and valued; sense of making a difference||Gain insights from beyond the academic world, with patients as a ‘sounding board’ and ‘reality check’; improve training course for trial clinicians following patient input; increase knowledge of patient groups and organizations; learn communication skills; sense of the research being worthwhile and rewarding; more favourable perception of the potential of patient involvement; success in overcoming tokenism||Improve documents and webpage used in the trial, including better accessibility; gain advice on data collection and analysis methods; input into dissemination plan and initiation of publication; creation of an environment for substantial discussion and challenge||Conflict over differing participation requirements between patients; feel ‘taken for granted’ and perspectives not valued; communication challenges posed by patient group diversity; difficulty attending meetings due to illness, treatment, employment or other commitments; frustration at limited input into study design; non-concordance between patient and researcher priorities||Defensiveness and lack of respect for patient perspectives; frustration at lack of patients’ understanding of the constraints of the research, and at not being able to incorporate all of their good ideas; non-concordance between patient and researcher priorities||Patient insights may not be fully representative, as group had high literacy levels compared with the general population|
Pérez Jolles et al.
|Sense of motivation and satisfaction at helping other patients and carers; meetings planned to fit around patients’ schedules; meetings conducted in preferred language; remuneration for participation||Gain insights on language to use to build trust with patients||Recommendations to improve study recruitment and retention; validation of and improvements to primary outcome measure and study tool; validation of analytical approach; credible, patient-led presentation of results to broader community; co-creation of visuals to enhance research presentations and publication; recommendations for further research||Challenging for patients to fully participate in results dissemination, e.g. unable to travel to a national conference to present due to competing responsibilities||None reported||Patient insights may not be fully representative, as group came from one community|
Howe et al.
|Opportunity for training around research and providing insights; growing confidence in role over time; gain new, rewarding skills; remuneration for participation; feel supported and valued||Growing confidence in role over time; help ensure accountability to funders and the public; successful relationship-building||Shaping of the research process, including study documents and analysis methods; collection of new data; improved communication through anticipating accessibility challenges; input into dissemination plan; development of a tool for reflective practice||Tensions between patient members on the relative value of different roles (co-researcher vs. advisory committee); feeling ‘on the periphery’ in certain roles; feel ‘lost’ through jargon, procedures and lack of support; accessibility challenges (literacy, mobility, distance, digital); remuneration may affect taxes and benefits||Time cost, i.e. completing reflective practice, explaining jargon, longer meetings and providing help with technical aspects of research||Patient insights may not be fully representative, as the group was not gender-balanced; risk for team relationships to become obligated, collusive or dependent; risk of personal needs or priorities influencing patient input|
Forsythe et al.
|Satisfaction from presenting and generating interest in the research||Improved skills to communicate with patients||Enhanced study recruitment and retention; validation and innovation of research topics, interventions, outcomes and measures; adapt materials and interventions to be more culturally or linguistically appropriate; modify intervention to be less burdensome for patients; contribution to data collection; new ways to share results; new audiences to reach and improved communication with different audiences; increasing credibility of study findings||Challenges with scheduling and logistics; limits on engagement due to health problems||Challenges with scheduling and logistics; difficulty identifying and fully involving diverse partners||Potential impact of challenges, such as managing different perspectives, on the way the project team works together|
Blackburn et al.
|Increased knowledge of own condition, treatment options and how to access services; gain skills, opportunity for formal training; understanding of research and research processes; positive emotional impact of meeting new people and feeling of contribution; payment for some activities||Gain better understanding of a condition and insights on lived experience; increased motivation through the enthusiasm that patient contributors bring; increased impact of research; raise profile of institution and patient involvement centre of excellence; ensure resources are channeled into important topics; guidance on presenting results to non-researchers||Improved relevance, clarity and accessibility of materials, surveys and processes; setting and maintaining focus on the research question; maintain realism; increased recruitment and follow-up rates; validation of project and findings; ensure research is beneficial to the patient group; support with data interpretation; promotion of outputs; generate new or future research questions||Challenging to fully participate due to changes in health status, availability and other commitments; financial costs may not be reimbursed; potential impact on benefits; opportunity cost for other activities such as paid work or childcare||Time costs, such as recruitment, meetings and communication; project management challenges, i.e. if patient contributors are unreliable; opportunity cost for research time due to diversion of funds to patient involvement; increased pressure and stress; sensitivity to criticism||Patient insights may not be fully representative as groups are homogeneous (i.e. if patients encourage friends to participate); risk of duplicating efforts, i.e. patient involvement and qualitative work; patient contributors may be unreliable; financial costs such as travel, meeting and venue costs, IT and other infrastructure, and payment for patient contributors to attend conferences|
Barnfield et al.
|None reported||Avoid ‘cherry picking’ perception through patient selection of relevant PLS for distribution||Guide selection of patient-relevant PLS; improved content and layout of PLS to optimize readability and comprehension; identify jargon the research team may have missed; improvements to website for PLS distribution||None reported||Time and financial cost related to conducting focus groups||Patient insights may not be fully representative, as all patients had a high level of education and previous involvement experience; personal experience may introduce bias, i.e. preference for using emotive language|