In this project, the public involvement principles developed in the co-creation workshops informed the structure and content of the PPIE ‘How to’ Guide for Researchers. The public involvement principles address the following issues: the interactions between researchers and citizens, and the governance structures enabling meaningful involvement in research. It describes the necessary considerations to actively involve citizens on an individual, a project, and an organisational level. A detailed description is provided in the PPIE ‘How to’ Guide for Researchers and is freely available via zenodo [26] via the link: https://zenodo.org/record/3515811.
Interactions between citizens and researchers
Interactions between citizens and researchers are key for this approach to meaningfully involve them in specific research activities. We refer to e.g. patients as people with a mental or physical illness or people with lived-experience in a certain field, e.g. mental health, and the public as people with a general interest in research or those people affected by research. Following public involvement principles and general considerations have been identified involving citizens in research: researchers offering involvement activities for citizens at different steps in the research process (once or multiple involvement is possible) may identify gaps of knowledge and experience needed in the project. It allows for checking the current research activity with respect to societal relevance. Involving citizens from the beginning, e.g., in the ideation phase, grant and funding application writing, and before the project starts helps to design a user-centred approach and inclusive research activities [27, 28]. To support the collaboration between these parties, researchers should provide mutual learning activities and career development opportunities, such as co-led talks and conferences, as well as visit events and workshops. Furthermore, citizens’ contributions to the project need to be visible and (monetarily and non-monetarily) honoured, i.e., honorariums, and authorship for citizens or consortium on publications. These contributions should be published under a creative common licence. The support of citizens’ contributions should take their availability regarding time and place into account.
On an individual level, researchers should consider fostering open and honest communication (creating a level playing field) that allows the building of trust between researchers and citizens. The establishment of ‘flat hierarchies’ helps in the comprehension and value of each other’s expertise by providing clear expectations (also in regard to reimbursement of time). Hierarchical structures are not solely driven by expertise, skills or experience. They should be developed with respect to shared-decision making and equal rights regarding the project outcomes and processes. Researchers should focus on transparent communication addressing potential conflicts of interest and avoiding the use of academic/research/medical jargon to describe the research project and results (especially when disseminated to the wider public). Continuous communication throughout and after the project supports collaboration. Researchers should provide job ‘clarification of activities or tasks they will be involved with’ to avoid miscommunication and disappointment in expected tasks and activities, and allow adaption of these tasks and roles during the collaboration. To demonstrate the value of citizens’ input, researcher should always inform citizens about adoption of research activities based on their feedback and communicate ways in which feedback has been incorporated into the research process.
Recruitment strategies for involvement activities
Recruitment strategies should consider defining a target group (potential people to involve), relevant demographics, such as age, patient within the same field or disease, geography, previous experiences, diversity, and equality. In order to gather different perspectives in the project, researchers should recruit a suitable number of citizens (broader network) and not just a single individual for a task or in the project. Tactics and approaches for recruitment may vary according to the group of patients and may be influenced for example by their stage of recovery and health status. In order to find suitable citizens for a research project, researchers should think about the individual and existing skills matrix that is needed and invest in support activities and orientation processes. Citizens might need specific training and skills for fulfilling tasks in the project, therefore, the research team should co-create the format, training agenda and content needed together with citizen representatives. In general, training should be tailor-made, modular, needs oriented and co-creative. Researchers should consider co-leading the training with an experienced patient or a member of the public interested in research. Patient or public ‘champions’ may also support in recruiting and could act as an entry point for new members. The moderation of the training might be outsourced depending on the researchers’ facilitation skills and include a person with lived-experience or from the public. The training might be provided at the beginning or during various stages throughout the project.
Governance structure of PPIE projects
On a project level, to enable citizens to get actively involved in research, the following governance structure should be established in a project. A Project Steering Board should include at least two citizens (e.g., patients with lived-experience or members of the public). The board should meet regularly (recommended twice a year) and advise the research team on the planned project activities and collaboration.
A Study Advisory Group consisting of 3–6 citizens (e.g., people with lived-experience on a specific topic required in the project). They consult the project team on a regular basis (i.e., once a month, or as appropriate and feasible for the individuals and the research project). The Study Advisory Group should be established before the project starts. Furthermore, working for instance with patients or a person with lived-experience requires an appropriate safety plan (depending on the topic and research area), for example, for physical or mental wellbeing; a clinician should be on call in case of emergency or be present at big events. External supervision should be provided for citizens on demand and on a regular basis to reflect on their roles and content (e.g., every 8 weeks).
Organisations considering implementing public involvement as an integral part of their research should consider the following institutionalised structures to enable meaningful involvement activities in research projects: a coordination of involvement activities (PPIE Officer) and contact point for complaints and concerns from patients (Patient Ombudsman). The PPIE Officer coordinates public involvement activities at an organisational level and has an oversight on all public involvement activities in the organisation. The PPIE Officer acts as a consultant and advisor and may be approached by researchers and interested citizens. The Patient Ombudsman is a neutral contact person that can be addressed in case of complaints and concerns. He/she is an independent external person. He/she investigates complaints from individuals and organisations about maladministration by the research organisation. Maladministration occurs if an institution or researcher fails to act in accordance with the Declaration of Helsinki or the principles of public involvement, or violates human rights. Maladministration can include administrative irregularities, unfairness, discrimination or the abuse of power, for example in the managing of public involvement funds, procurement or recruitment policies.
Support structures provided by organisations, such as regular network meetings and learning events, foster mutual exchange while carrying out public involvement activities. For example, offering a family-friendly work environment by setting up or reimbursement of childcare costs might support citizens to take part in research activities. Additionally, a public platform introducing public involvement projects and activities may increase the visibility of projects and opportunities to become involved in research. For instance, presenting the involved project participants, the project process by displaying the most important steps, the methods used and an online space for exchange and learning. The platform could inform and connect different stakeholders in terms of available opportunities in research projects and virtual matchmaking events with researchers and research projects.
Monitoring PPIE activities
Successful public involvement activities in research need a structured means of monitoring the quality and implementation of public involvement activities. A representative of the Study Advisory Group (citizens), PPIE Officer and the Principal Investigator of the research project together monitor the implementation of public involvement activities in the research project. In regular meetings (e.g., suggestion 2-4x per year and on demand), the team evaluates past and current public involvement activities and discuss further steps for implementation and improvement. They may consult with the Patient Ombudsman discussing conflicts between the parties and/or individual complaints. The team documents their results and gives recommendations for further the implementation of future public involvement activities. A comprehensive tool for self-assessment of self-involvement activities on a project and organisational level, and a checklist to prepare involvement activities before, during and after the project may be used for monitoring purposes and can be found in the PPIE ‚How to’ Guide for Researchers.
Concept of a PPIE Implementation Programme
The PPIE Implementation Programme aims to support implementation of public involvement activities with citizens in the area of ‘active involvement’ across different phases of the research cycle (from setting the agenda to interpreting data) and its governance. It supports public involvement activities with up to EUR 60.000 over a project period of max. 12 months implemented at Austrian research organisations and universities. An independent panel of experts, consisting of representatives from two scientific experts in the field public involvement, a citizen and patient in the field of health, and two young people (16–25 years) with basic scientific knowledge, assesses the applications based on the quality of involvement, societal impact, implementation plan, and feasibility within this time frame given. The evaluation of public involvement activities includes views from all stakeholders that participated in the activities (researchers and citizens) and addresses the following dimensions: quality of involvement, learnings from activities, future and sustainability of activities, scientific and societal impact of activities on individual and organisational level, implementation of activities, and satisfaction with the activities. In addition, and at the core of the programme is the aim to builds the institutionalised support at LBG. This support will take form of offering individual consultation for researchers and citizens, training opportunities, such as webinars and co-creation workshops with different stakeholder groups, as well as learning opportunities through a peer network to establish a public involvement community and embed public involvement in the Austrian research landscape.