Table 6 Principles of Patient and Stakeholder Engagement (PSE) in the research process

Sims et al. [32]

Pollock et al. [31]

Gesell et al. [3]

Roach et al. [29]

Brown et al. [13]

Arnold et al. [28]

Hoekstra et al. [11]

Principals related to research process

▪ Ethical considerations

▪ Development of a suitable protocol (road map) for the stakeholders and Explanation of the role and responsibility of stakeholders

▪ Detailed and operational planning for the engagement of stakeholders

▪ Use the targeted strategy and select a diverse group of stakeholders with good experience through local and national professionals or community networks and spend proper time and consideration to recruit stakeholders

▪ Predetermined planning to manage disagreements between stakeholders and researchers

▪ Maintaining transparency and trust in communication with stakeholders

▪ Active participation of all co-researchers in all parts of the research process on an equal basis

▪ Determine level and type of stakeholder engagement according to their interest, skill, time, health status and project needs and budget constraints

▪ Develop an engagement database

▪ Engage groups that are marginalized or disadvantaged in society

▪ Choosing the appropriate time and place to hold consultation meetings for stakeholders (e.g., patients with mobility restrictions)

▪ Have informal meetings (to get to know each other) and structured meetings (face-to-face, phone, conference calls)

▪ Ensuring that IT support is available before and during meetings

▪ More frequent, shorter, meetings (rather than less frequent, longer meetings)

▪ Permanent reflection on relationships and power dynamics in the field of engagement in research processes

▪ Consideration the experience of the research team about stakeholder engagement at the planning stage

▪ Include a knowledge broker or other facilitator to support the collaborative process (e.g., facilitate conversations)

▪ Funding for the collaborative research activities

Principals related to stakeholders

▪ Orientation and ongoing training of stakeholders

▪ Pay the engagement costs of patients and caregivers (such as travel expenses)

▪ Attention to the needs and values of stakeholders and issues that may provoke emotional responses from stakeholders

▪ Getting feedback from the stakeholders about their engagement in the research process continuously

▪ Evaluating the level of satisfaction of the stakeholders from the engagement and the feeling of the value of their perspective

▪ Providing Regular “check-ins” and feedback opportunities for stakeholders to share their viewpoints and ask questions

▪ Careful attention to potential burnout, overcommitment

▪ The benefits of being engaged in research should be clearly defined

▪ Cooperation in the research project should depart from these familiar role patterns and allow for more liberal cooperation, for example, without entering into a therapy contract

Principals related to researchers

▪ Using simple and understandable language in communication with patients and caregivers (e.g., aphasia-friendly information sheet)

▪ Listening carefully to the opinions and views of stakeholders

▪ Considering the appropriate and different communication methods for engagement of stakeholders and informing them about the research process (face-to-face interview, email, phone, etc.)

▪ Flexibility and openness in stakeholder engagement

▪ Educate and/or train researchers about stakeholder engagement

▪ Use different tools to ensure that research users understand and/or participate in everything (e.g., flipcharts, communication tools)