Table 2.
References | Title | Country | Discipline/context | PPI contributors (who were involved) | Rationale for conducting PPI | Aims of PPI component |
---|---|---|---|---|---|---|
Birch et al. 22 | Development and formative evaluation of patient research partner involvement in a multidisciplinary European translational research project | The UK and Europe | Translational rheumatology | People with rheumatoid arthritis and people with an elevated risk of developing rheumatoid arthritis. | To ensure the quality and relevance of research, and to facilitate effective translation and dissemination of the research findings. | To capture individuals' thoughts about being at risk of developing rheumatoid arthritis, their acceptance of predictive testing and preferences for risk communication. A further aim was the development and evaluation of informational materials for those at risk of developing rheumatoid arthritis. |
Bridgelal Ram et al. 23 | Issues and challenges of involving users in medical device development | UK | Medical product development | Adults with epidermolysis bullosa (EB), their carers; and specialist nurses in the management of complex wounds. Along with the EB nurses, the multidisciplinary team comprised designers, materials scientists, engineers and a pharmacist. | Previous EB products failed to manage adequately the problems experienced by those with EB concerning both materials used and product design. PPI aimed to involve product users in the design of new products in an attempt to address these issues. | To elicit data on current medical products, and identify new areas for research. |
Grier et al. 24 | Finding and engaging patients and the public to work collaboratively on an acute infection microbiology research public panel | UK | Microbiology | People with experience of being hospitalized with a serious infection (or someone very close to them). | Patient input may inform the recruitment strategy of a large and diverse PPI panel by identifying potential avenues for recruitment. | To recruit participants for a PPI Advisory Panel. |
Russel et al. 25 | Selective Patient and Public Involvement: The promise and perils of pharmaceutical intervention for autism | UK | Biomedical autism research | People with autism, friends, family and people who worked with children or adults with autism. | To establish what is acceptable and not acceptable to various members of the autism community regarding drug development. | To assess the diversity of community views to illustrate how PPI was used in the biomedical context. |
Supple et al. 26 | From tokenism to meaningful engagement: best practices in patient involvement in an EU project | UK | Asthma research | Patient representatives and representatives from patient organizations. | To establish good practice for information and evidence on patient involvement. | To provide the patients' perspective, support, and insight into the project's research and dissemination processes; helping the research ‘stay connected’ to the patients' experience and needs. |
Elberse et al. 27 | Patient involvement in a scientific advisory process: Setting the research agenda for medical products | The Netherlands | Medical product development | Patients, ‘Expert’ Patients, informal carers and nonpatient representatives across 15 disease domains. | To establish a research agenda responsive to the needs of ‘end users’ regarding future medical products and to make efficient use of limited research resources. | To provide input from patient groups of 15 disease domains to the national health advisory committee, which they could use in their advisory process to establish advice on a national research agenda for medical products. |
Baart and Abma 30 | Patient participation in fundamental psychiatric genomics research: a Dutch case study | The Netherlands | Psychiatric genomics | Members of patient groups (Schizophrenia), patient group board members, research assistants and social scientists. | Funders mandate to improve the researcher's interactions with patients to secure more funding. | To bring together and integrate various knowledge sources, scientific and experiential. |
Sohy et al. 28 | Outside in–inside out. Creating focus on the patient—a vaccine company perspective | Belgium | Vaccine development | Employees at a vaccine production company. | Encouraging vaccine producers that they are vaccine ‘patients' so that they can better provide input into the vaccine production process as patients rather than solely as producers. | To promote the understanding that employees in a vaccine company are themselves ‘vaccine patients’, and to create a bridge between employees' day‐to‐day activities and their impact on patients. |
Chalasani et al. 29 | Enhancing the incorporation of the patient's voice in drug development and evaluation | USA | Drug development | Patients, caregivers, patient advocates and advocacy groups, healthcare providers, professional societies, scientific and academic experts, drug developers and others. | Funding body requirements to involve patients. | To engage patients and elicit their perspectives on two topics: (1) the most significant symptoms of their condition and the impact of the condition on daily life and, (2) their current treatment approaches. |
Abbreviation: PPI, Patient and Public Involvement.