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Table 5 Issues associated with partnering with patients in the Translational phase of research

From: Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Themes Issues identified in the literature Recommendations identified in the literature
Research step: Dissemination
Patients exclusion from research stage • Patients are usually excluded from research results dissemination/communication activities (e.g., conference presentations, scientific articles) [13, 32].
• The budget and the time required for the preparation of manuscripts and the dissemination of results are usually under estimated, which could have an impact on the effective implication of patient in this stage of research [33].
• Some researcher encourage patients to disseminate results through social media and patient advocacy groups [13].
• Research teams might also consider alternative dissemination strategies, such as community-forums presentations, non-traditional or locally based media outlets, connecting with local health consortia or community networks [24].
Disagreement on priorities • Conflict may arise between researchers and patient partners concerning the focus of research result dissemination activities and tools.
  o Researchers usually prefer highlighting generalizable outcomes, which increase the chance of publication and of obtaining future funding, while patient partners usually prefer highlighting results that lead to improved services and/or new or updated public policies [25].
 
Patients’ co-authorship negatively impacting dissemination • Medical journals might have a reluctant attitude towards publishing research articles in which patients are identified as coauthors [13]. • Bibliographic databases should add indexing terms that identify research made in partnership with patients, which would facilitate their future use and citation [5].
Research step: Implementation
  n/a  
Research step: Evaluation
Lack of evaluation framework • There is a lack of evaluation framework that could help demonstrating the value and impact of patient engagement in research [13, 28, 33].
• Concerns were raised over the lack of evidence-based policy in support of engaging patients in research, particularly in light of the considerable time, cost and efforts required to embrace ‘effective’ partnership with patients in healthcare research [34].