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Table 2 Reported benefits and risks of involving patients in preparing peer-reviewed publications

From: Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

Reference #Benefits of patient involvementRisks of patient involvement
For patientsFor othersFor the projectFor patientsFor othersFor the project
[19]
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 representativeEnrich researcher understanding of the topic; learn how to tailor projects around patients’ availability, health status and interestPatients raised new issues, such as sensitive data management and cultural diversity; patients asked questions that produced useful discussionMay initially feel daunted by experienced researchers and clinicians; time needed to get to grips with complex informationTime investment to brief patients before meetingsPatient withdrawal due to ill health can produce team gaps and make it challenging to sustain a volunteer-run committee in the longer term
[20]
Pollard et al.
Improved confidence and skills, including facilitation, handwriting and speaking; feel supported by having an academic researcher dedicated to evaluating the patient experienceGain 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 communicationStakeholder 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 meetingsOther stakeholders may be cautious of patient involvementNeed to structure projects to address patients’ needs (e.g. fatigue, mobility and communication concerns)
[21]
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-tokenisticSupport 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 practiceHelp 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 prioritiesNavigation of time pressures and power dynamics; no evaluation of the experience of the patients themselvesNavigation of time pressures and power dynamicsBest 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
[22]
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 differenceGain 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 tokenismImprove 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 challengeConflict 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 prioritiesDefensiveness 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 prioritiesPatient insights may not be fully representative, as group had high literacy levels compared with the general population
[23]
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 participationGain insights on language to use to build trust with patientsRecommendations 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 researchChallenging for patients to fully participate in results dissemination, e.g. unable to travel to a national conference to present due to competing responsibilitiesNone reportedPatient insights may not be fully representative, as group came from one community
[24]
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 valuedGrowing confidence in role over time; help ensure accountability to funders and the public; successful relationship-buildingShaping 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 practiceTensions 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 benefitsTime cost, i.e. completing reflective practice, explaining jargon, longer meetings and providing help with technical aspects of researchPatient 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
[25]
Forsythe et al.
Satisfaction from presenting and generating interest in the researchImproved skills to communicate with patientsEnhanced 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 findingsChallenges with scheduling and logistics; limits on engagement due to health problemsChallenges with scheduling and logistics; difficulty identifying and fully involving diverse partnersPotential impact of challenges, such as managing different perspectives, on the way the project team works together
[26]
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 activitiesGain 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-researchersImproved 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 questionsChallenging 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 childcareTime 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 criticismPatient 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
[27]
Barnfield et al.
None reportedAvoid ‘cherry picking’ perception through patient selection of relevant PLS for distributionGuide 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 distributionNone reportedTime and financial cost related to conducting focus groupsPatient 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
  1. PLS plain language summary
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