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. 2022 Oct 10;25(6):2680–2699. doi: 10.1111/hex.13615

Table 4.

Impact, evaluation and learning opportunities of included studies

References Impact of PPI Evaluation of PPI process Potential learning opportunities for PPI in preclinical research
Birch et al. 22 PPI contributors contributed to research activities including attending and contributing to scientific meetings, developing a glossary resource, contributing to a qualitative review paper, informed interview schedules and interpreting of qualitative data, assisted with the development of informational resources, evaluating a web‐based platform for communicating risk information of rheumatoid arthritis, developing patient questionnaires and informational resources, contributing to project website, developing lay summaries of research findings, designing posters for dissemination at conferences. Qualitative and Quantitative Surveys. All PRPS reported a positive impact from their involvement. Mainly in terms of contributing their perspectives to researchers and their ability to communicate with the public. Researchers and PRPs both reported they would have preferred more training in PPI. PPI contributors also expressed a desire for more ongoing feedback on the impact of their contribution to research activities.
Bridgelal Ram et al. 23 Researchers and patients identified unmet needs and potential solutions for common EB issues during their PPI workshop. A design team used this data to develop products to meet this need. These products were then presented to the workshop participants for further discussion and refinement. None reported. PPI contributors living with serious conditions may become unwell, meaning researchers need to be flexible in organizing PPI sessions. The researchers also considered it important to involve clinicians and carers, who can contribute from their own experiences of working with serious conditions and may be required to administer any outputs from research.
Grier et al. 24 Hosting a public meeting meant that potential PPI panel members had the opportunity to meet the research team and ask questions about what involvement constituted without committing. Some motivational factors for joining a PPI panel were identified relating to themes of concern with the impact of antimicrobial resistance in wider society, a sense of wanting to give something back and feeling as if they had something to offer. None reported. Researchers considered that having positive interactions with members of the research team may encourage people to become involved in PPI. PPI training for researchers was also seen as beneficial as lab‐based researchers generally have limited interaction with patients/service users.
Russel et al. 25 Meeting attendees submitted a series of comments relating to the suitability of the research agenda presented by researchers for autism. The feedback demonstrated the diverse views of the autism community which was not represented initially by representatives of patient organizations. This is due to the researchers' initial PPI component only selecting patients from patient organizations that already supported their research agenda. This led to the classification of ‘selective PPI’ where only a sympathetic and/or limited is included in PPI. None reported. Representativeness is an important challenge for PPI. Preclinical researchers conducting PPI are at risk of only including patients who are sympathetic towards their viewpoints. Researchers should try to include a diverse set of views when conducting PPI.
Supple et al. 26 PPI impacted the study in several ways. Patients collaborated with researchers on the submission of the funding application. PPI also altered the recruitment strategy for participants submitting biological samples for the preclinical project. PPI contributors enhanced the dissemination strategy by contributing to research papers from their patient perspectives. PPI contributors also helped draft lay summaries for each paper from the project and spoke at conferences about their experiences in the project. None reported.

This study reports several learning outcomes for preclinical PPI:

  • involve patients early where patient input is most impactful;
  • involve patients deeply by having regular collaboration;
  • provide patients with feedback on project progress;
  • involve patients in the dissemination of research findings;
  • allow patients to convey their own stories and experiences to help connect preclinical researchers with the needs of patients.
Elberse et al. 27 Researchers and patients developed a report in collaboration with an independent advisory group that provides advice regarding public health policy to a national Minister for Health. In the report, patients articulated needs and outlined a research agenda for medical products regarding their conditions. This report was presented to the Minister for Health to inform a national research agenda for medical products. None reported. Researchers considered building relationships in the early stages of research important for collaborating with PPI contributors throughout the project. Researchers also found it beneficial to involve patients, carers and healthcare providers in PPI, due to their knowledge and experiences of particular conditions.
Baart and Abma 30 Researchers and patients jointly submitted an action paper containing a series of recommendations for improving communication and interaction between researchers and patients, for example, redesigning the group website to make it more accessible for patients, using conferences to interact with patients and families, jointly hosting researcher/patient workshops and collaborating on publications. None reported. Researchers seeking to incorporate PPI should start by identifying areas of common interest between researchers and patients. Identifying common ground can serve as a basis for developing/strengthening relationships between groups of stakeholders.
Sohy et al. 28 PPI had many impacts including hosting patient‐focused webinars for employees, panel discussions between researchers and patients, sending employees on visits to developing countries to see the impact of vaccines they produce and including patient‐focused sections in research publications. Quantitative surveys reported that 72% of employees understood the purpose of the initiative and 65% reported improved patient interactions from the company with patients. Preclinical researchers expressed a desire for increased interaction with patients in this study. Taking part in PPI may help preclinical researchers stay connected with the needs of patients who are served by their research.
Chalasani et al. 29 Researchers strengthened their understanding of the disease burden for patients and their families as well as deepened their knowledge of the limitations and benefits of current treatment options. Meeting transcripts were posted online including a ‘Voice of the Patient’ summary report that captured PPI contributors' perspectives to provide further context from the panel meetings. Researchers used this input to provide patient context when advising drug development programmes and assessing products under review for market approval. None reported. Researchers published a summary of the meeting afterwards using PPI contributors' own words from the meeting transcript, webcast recording and comments submitted by PPI contributors attending the panel sessions.

Abbreviation: PPI, Patient and Public Involvement.