Table 6 Summary of qualitative analysis of the activities, goals and organizational structures that characterize patient partnership in each domain of the health system

Health research (314)

(1) Activities specific to the conduct of a particular research project

(2) Activities related to priority-setting, governance, scoping of larger programmes of research

Contribute to the design and conduct of research responsive to the needs of patients and communities

(1) Research team members, collaborators, co-investigators interacting directly with other researchers

(2) Advisory group, steering committee members

Health planning, service design, quality improvement (152)

Participated in activities to define and improve clinical pathways. Often only general description of what these activities were

Develop patient-centred clinical care processes to improve delivery of healthcare, contribute to improvement of organizational initiatives

Patient advisory committees, sometimes called stakeholder or community boards or councils, which typically provide input to a planning or service design process

Health policy and governance (56)

Wide array of activities, including offering opinions and perspectives, tangible assistance operationalizing programmes, co-constructing priorities and policies

Most commonly, improving safety and quality of care, assessing and implementing health services and technologies

Participation in clinical governance and guideline development groups, including autonomous patient-only groups or serving as representatives on governing boards and advisory councils which offer insight and/or oversight to decision-makers

Patient education (23)

Develop education material, study information, mentoring other patient partners, delivering education to patients, sharing journeys and experiences

Most commonly described in papers addressing multiple domains, where goals of patient partnership contributed to broader goals of research project or health service organization

Members of advisory board or council, research partners or collaborators

Health professional education (19)

Development, delivery, evaluation of education programming through creation of content and resources. Delivery of content and teaching to trainees

Ensure that learning content reflected patient experiences and preferences

Few structures described beyond participation in consultation meetings or acting in teaching roles as mentor or “co-tutor”

Health technology assessment (HTA) (21)

Few specific examples, general descriptions of “provide advice”, submit evidence, review protocols. Activities typically occurred in discrete phases of the HTA process

Support funding decisions about health technologies

Representatives of patient organizations or groups structured by organization to elicit patient insight, seldom interacting with organizational staff. Less commonly, members of advisory committees alongside other experts and organizational staff