Table 6 Barriers and facilitators to identifying patient preferences

Resources

• Lack of funding/infrastructure (9)

• Limited time (2)

• Lack of qualitative or mixed methods expertise on guideline panels (3)

• Access/acquire more funding (3)

• Deploy dedicated staff

• Include social worker or other type of “coach” on team to liaise with patients and/or elicit preferences

• Include qualitative expertise on team

Processes

• Patients not given opportunity to be fully engaged (2)

• Difficulty in clearly articulating to patients what information is wanted of them or in using lay language instead of scientific words (3)

• Guideline development a lengthy process; difficult to keep patients engaged

• Identifying patients (10)

• Identifying patients that represent the preferences of the average patient (2)

• Identifying diverse patients whose preferences may vary (7)

• Lack of patient groups/associations (3)

• Establish organizational mandate or policy for patient involvement

• Use interviews or focus groups to gather diverse views, and bring the results to the clinician panel (rather than involve patients on the panel)

• Involve patients earlier (i.e. from topic selection)

• Involve patients as panelists so their views influence entire guideline development process (2)

• Template interview guide with prompts that could be tailored

• Template search strategy to find published research on patient preferences

• National umbrella organization of patients, or that coordinates access to patients (9)

Clinicians

• History/culture of medicine; clinicians are expert and know best

• Do not value patient preferences

• Lack insight/training on how to facilitate patient involvement on panels

• Training or coaching to promote culture change and greater acceptance of patient preferences

• Broad awareness/leaders in all settings that advocate for preference-informed health care (2)

Patients

• Bias or conflicts of interest (3)

• Lack of education/knowledge about clinical topics (2)

• Lack of confidence to contribute

• Lack of knowledge about guideline development process

• Involve or seek input from more than one patient (4)

• Training in guideline development, the clinical topic, and their role (3)

Empirical evidence

• Lack of evidence on how to assess and use patient preferences (2)

• Little published research on patient preferences (4)

• Clear and comprehensive guidance on how to capture and use diverse patient preferences (5)

• Survey/data bank of patient concerns (3)

• More research on how to identify and incorporate patient preferences (2)