Table 3

Patient engagement (PE) quality criteria summary and description

PE Quality Criterion*Brief description and rationalePractical illustrations†
1. Shared purpose Brief description: This refers to the importance of all stakeholders agreeing on the project’s aims and outcomes before starting the project.
Rationale: Early involvement is a key factor for quality of the process and includes the consideration of all perspectives in the early phase of planning.40
  • The organisation worked with the research team and people affected by Parkinson’s to create a survey to consult a large patient population about attitudes to stem cell therapy.1

  • A subset of survey respondents worked with the stem cell research team to explore and understand survey findings and were then invited to work as part of the research team to further develop the work and apply for funding.1

2. Respect and accessibility Brief description: This refers to (1) respecting each other, and respectful interactions within the project to be established among partners, and (2) openness to and inclusion of individuals and communities (to the project) without discrimination.
Rationale: A key quality aspect is the importance of securing a supportive culture that reflects that all stakeholders acknowledge the patients’ perspective as equally important to that of other professional or authoritative stakeholders.41 Practical steps must be taken to ensure access for all.42
  • In the workshops we used moderators and verbal and nonverbal communication using for example pictures, as feelings may be better expressed with images.2

  • We followed up in 1:1 meetings to clarify all individual perspectives and to understand if anything in the group was missed.2

  • We created a process to provide access for patients who were not comfortable participating in a group setting and those with limited mobility.3

3. Representativeness of stakeholders Brief description: This refers to the mix of people involved, which should reflect the needs of the project, and the interests of those who may benefit from project outputs.
Rationale: Ensuring optimal representativeness is demanding but essential for any PE activity43 and involves careful consideration of the selection of patient representatives. For example, appointed patient representatives in committees may often be particularly resourceful relating to their disease and treatment, and it becomes important to consider how to ensure perspectives of less resourceful patients are considered.
  • Different age groups, stages of disease, ethnicities and geographies were incorporated into the selection of patient/caregiver partners using a database of ~17 000 patients and caregivers.3

  • Members represent different socioeconomic backgrounds and diseases. Also, healthy young people are involved to ensure that they cannot have the bias of the disease and ensure that the general feedback is not connected with a specific condition.4

4. Roles and responsibilities Brief description: This refers to documentation of agreed and ideally co-created roles and responsibilities, indicating that all aspects of project needs will be established upfront and revisited regularly.
Rationale: Clarity on roles and responsibilities of all partners is essential for the implementation of equitable working practices that ensure PE opinions and expertise are respected and incorporated where possible into PE projects.
  • Contracts were mutually agreed on and entered into up front—before the start of the projects—and modified as appropriate along the way.5

  • Patients and caregivers were clear on their role in patient pathway mapping and how the data would be used. Patients and caregivers were also provided direction on how their input would be used with feedback loops built in throughout.3

  • Commitment documents were developed with patients and caregivers.3

  • Meetings and continued teleconferences were used to ensure that each member of the consortium knew what was expected and were accountable to everyone else.6

5. Capacity and capability for engagement Brief description: This refers to (1) capacity as having relevant and dedicated resources from all stakeholders and (2) capabilities for all stakeholders to enable meaningful engagement.
Rationale: It is essential that everyone has sufficient knowledge and skills to contribute effectively. This includes the professionals having sufficient PE knowledge and skills as well as patients having sufficient trials knowledge.
  • Each patient/caregiver completed an assessment on their engagement preferences and received coaching during this (project) to ensure they were comfortable interacting with various stakeholders.3

  • Training and tool kits have been developed for internal personnel, and external moderators are selected based on experience working with patients.5

  • The patients involved had the requisite expertise as established advocates and included people with health communications expertise as well as experience as patients.7

6. Transparency in communication and documentation Brief description: This refers to the establishment of communications plan and ongoing project documentation that can be shared with stakeholders. Communication among stakeholders must be open, honest and complete.
Rationale: Transparent communications throughout the project both internally and externally is essential to ensure credibility of process and findings. Publication of protocols and results of all trials is increasingly recognised as essential for the effective and ethical evaluation of clinical products.44 45
  • An involvement plan was developed for the project and shared. Other documentation shared between all stakeholders included: pre-read information; an immediate follow-up email detailing next steps; an intermediate follow-up document with interim findings. Further documentation will include long-term follow-up (6–12 months).1

  • Every month all patients were emailed for questions or updated with information.6

7. Continuity and sustainability Brief description: This refers to the smooth progression of the project and efforts to maintain relationships with stakeholders beyond a single project.
Rationale: Involvement of patients throughout the process as much as feasible, including aspects such as evaluation, dissemination and implementation can be very beneficial for the quality of the process.46 Additionally, ongoing commitment to PE and development of long-term relationships will enhance quality.
  • Patient representative organisation recommended that further partnership working results in patients becoming part of the research team, co-applicants and co-authors.1

  • All patients and caregivers that participated were kept abreast of development and continuous improvement of the initiative through electronic updates.3

  • The plan included launch in two illness areas with the intent, if successful, for expansion beyond those areas and in additional. The team, including patient experts, has been involved in those discussions. A third illness area was launched, and more are planned.7