Table 3.

Application, benefits and challenges of included studies

References	Format used	PPI methods	NIHR stages of implementation	Benefits	Challenges
Birch et al. 22	Patient Research Partners (PRPs)	PRPs were recruited via links with several patient groups and they collaborated with researchers throughout a large‐scale preclinical research project on a number of research activities. This included contributing to research materials, assisting with funding applications and collaborating on dissemination strategies. PPI Training was provided on an ad hoc basis for PRPs.	Identifying and prioritizing, designing and managing, undertaking, disseminating, evaluating impact	Researchers and PRPs both reported the value of building relationships with each other, both noting they developed their knowledge and communication skills. This facilitated the effective dissemination of research findings. By building relationships with PRPs, researchers developed a series of unexpected spin‐off projects such as creating patient‐informed educational resources to communicate scientific concepts to people living with rheumatoid arthritis.	The study reported that despite including an evaluation study, its findings are unlikely to be representative of the patient population due to most PRPs being active members of patient organizations and therefore were already fully engaged with the idea of becoming involved in research.
Bridgelal Ram et al. 23	Workshops	Informed by the Knowledge Transfer model. Involved informal workshops to carry out brainstorming sessions. Population recruited through EB nurses and meetings held in conjunction with clinics. Initial meetings were to assess current wound care products and provide a knowledge base for future products. Approach gathered data and formed new ideas for product design driven by user needs. Brainstorming workshops took place afterwards with recruitment led by EB nurses, as they knew their patients best. The workshop format allowed the gathering of rich data from varying perspectives, allowing participants to voice their ideas and reflect on the responses of others. As previously mentioned, it also resulted in invitations to patients' homes to observe dressing changes and take photographs where appropriate. Their concepts and feedback were brought to a design team to translate into products.	Identifying and prioritizing	The study reported that initial collaboration between patients and researchers led to invitations from patients to unexpected yet impactful opportunities such as visits to patients' homes to see how they manage their condition.	Many workshops were rescheduled due to participants being unwell. Flexibility was required in planning, postponing and rescheduling workshops due to PPI contributors becoming unwell meaning they could not attend.
Grier et al. 24	One 2‐h meeting to provide information about the scientific research and inform a PPI panel recruitment strategy	Participants were invited to a meeting where they could meet the research team and ask questions about the PPI panel without committing. A role profile was developed so people could see what was expected of them and what they could expect from the research team.	Identifying and prioritizing	Hosting a public event for prospective panel members to attend meant that researchers could clarify what PPI meant and what they could expect from being part of a PPI Advisory Panel. This ensured potential PPI panel members understood what it meant to be involved before committing. Meeting attendees were also asked to fill in an expression of interest form, allowing researchers to recruit a more diverse PPI panel in terms of age, experience and background.	Researchers describe the process of recruiting a PPI panel as time‐consuming and noted a lack of success early in the study. The study also notes that PPI has costs for time and funding, with significant time spent seeking PPI training for researchers. Finally, researchers noted that despite recruiting a diverse PPI Advisory Panel, the panel may not be fully representative of people with experience of serious infliction.
Russel et al. 25	Public meeting/email feedback	A promotional video was shown at a public event regarding a research agenda for autism. Attendees were members of the autism community and could submit their feedback on the video at the event or via email so that the research team could understand how people viewed the suitability of their research agenda.	Designing and managing	None identified.	The study notes that if PPI is required by funding bodies there needs to be further training on conducting PPI correctly. Researchers should note that their PPI contributors' viewpoints may not be representative of an entire patient population.
Supple et al. 26	PPI Advisory Group	A Patient Input Platform (PIP) was established at the start of the project so researchers and PPI contributors could work together to provide the patients' perspective, support and insight into the project's different research and dissemination processes, with a view to helping the research stay ‘connected’ to the patient experience and needs.	Identifying and prioritizing, designing and managing, disseminating	Researchers reported that PPI contributors were a source of motivation for them when faced with difficulties in the research project.	The English language was a barrier to adequate representation.
					Limited travel capacity for some PPI contributors living with serious conditions. Duration of commitment over long‐term projects.
					PPI contributors did not possess the scientific knowledge to have meaningful discussions around aspects of research such as specific research techniques.
					Difficulty persuading preclinical researchers to embrace PPI.
Elberse et al. 27	Interviews	A participatory approach based on the dialogue model was used comprising four phases: (1) exploration, (2) consultation and prioritization, (3) integration and (4) follow‐up.	Identifying and prioritizing	The study described that PPI contributors felt empowered from taking part in the PPI process. Becoming involved in research, sharing knowledge and seeing a tangible impact resulted in PPI contributors valuing their experiential knowledge more. This led to several of the PPI contributors developing their own research agendas from the patient perspective in collaboration with patient organizations.	The study reported concerns about the representativeness of PPI contributors.
					The authors suggested that PPI contributors may have been indirectly influenced by pharmaceutical companies due to their ongoing use of medical products, although no explicit evidence of this was apparent. Researchers also suggested that it was difficult to conduct PPI in a way that was narrow enough to meet the needs of their research (articulating needs for medical products) while also being sufficiently broad for patients to contribute based on their own experience.
		In phase 1, patients were identified through existing patient organizations. 29 semistructured exploratory interviews were conducted to pilot the appropriateness of research methods with potential participants.
		Phase 2 comprised semistructured in‐depth interviews and focus groups with patients, expert patients, carers and nonpatient representatives to gather perspectives relating to product development. For focus groups, an exercise was used where participants started by discussing their personal experiences to assist patients in articulating needs for medical products and looked at the argument underlying that need.
		During Phase 3, patient input was analysed, taking into account similarities, relations and differences between patient groups. The report was written up.
		In Phase 4, follow‐up interviews were held with patients taking part in the study to gain insight into the usefulness of PPI.
Baart and Abma 30	PPI Advisory Panel and interviews	Interviews and focus groups were held to ask patients and scientists what they wanted to know about schizophrenia. This led to identifying areas of common interest between patients and scientists. Once common ground was established, patients made practical recommendations for improved dialogue between scientists and the public and collaborated on a series of activities to improve the interaction between researchers and patients such as a jointly delivered conference workshop.	Identifying and prioritizing, disseminating	Researchers found that engaging in the PPI process helped identify common ground between researchers and patients. This helped form a relationship between researchers and patients, which was used as a basis for interaction with patients—for exchanging information and discussion.	The study reported that the dialogue model, used as a framework for PPI, was a good starting point for interaction between patients and researchers but not necessarily suited for preclinical research. This is due to the long‐term nature of the research, concerns around a lack of subjectivity by PPI contributors being incompatible with preclinical research, and representativeness of viewpoints from PPI contributors of the general patient population. The study also noted an initial scepticism of preclinical researchers towards PPI.
Sohy et al. 28	Interviews and PPI champions	In face‐to‐face interviews, 40 members of staff were invited to identify barriers and enablers to patient focus in their work. Researchers used these themes to create a framework for PPI activities aiming to increase employees' contact with patients in daily work. Activities included hosting webinars with patients, obtaining patient insight on relevant topics, engaging with patient organizations and creating Voice of the Patient (VoP) Champions who promote PPI within the workplace.	Identifying and prioritizing, undertaking, disseminating, evaluating impact	During a PPI focus group discussion, employees at the vaccine production company came up with their own initiative: nominating a “designated patient” at company meetings. The designated patient would represent the patients' interests in the matter being discussed at meetings.	The strength of the evaluation study is limited by the lack of baseline measures before taking the evaluation survey. This study also noted that PPI contributors were employees of the company producing the vaccines in question.
Chalasani et al. 29	Panel meetings	Panel meetings comprised of patients, caregivers and representatives—formed for a public meeting. Meetings start with panel members sharing their experiences of living with a particular condition, followed by a semistructured, large group facilitated discussion that encourages participation from other patients, caregivers and patient representatives attending in‐person and via webcast. Patient input gathered from meetings identified areas of unmet need and new outcome measures for clinical trials.	Identifying and prioritizing	Patient input gathered from panel meetings primarily informed drug development programmes. However, this input also had wider use in identifying areas of unmet need in patient populations, developing new outcome measures for clinical trials, planning follow‐up workshops and identifying patient representatives to serve on advisory committees.	Panel meetings were limited to focus on a single disease at a time, meaning many other disease areas could not be addressed by this format. Researchers also had limited meeting space and staff resources to host meetings.

Abbreviations: NIHR, National Institute for Health Research; PPI, Patient and Public Involvement.