Table 3

Patient-reported barriers to collaboration and strategies to reduce these barriers

Barriers to contribution identified by partnersHelpful tools, responses and points to consider to encourage partners to contribute
Feeling like an observer in the conference, rather than a colleague
  • Not involved from the beginning

  • Lack of information

Involve partners right from the start
  • Provide background information in understandable language (research protocol)

  • Treat all team members equally

Inadequate introduction
  • Not knowing what is expected

  • Feeling not prepared for the job

  • Unaware of the aims of the conference

  • Why me?

Discuss mutual expectations in a face-to-face meeting before the start of the conference
  • What kind of contribution is expected from the partner?

  • Does the partner have affinity with the research topic(s)?

  • In which phase or activities will the partner be involved?

  • Who takes the initiative for contact and how?

  • How will the partner be informed and supported along the way?

  • What are the specific needs of the partner?

Doubts about their added value
  • Feeling too shy to relate personal stories

  • Assumption that experiences are obvious and already known to professionals

  • Low status of anecdotal knowledge

Encourage partners deliberately
  • Adapt to a patient-centred communication style and promote open dialogue, attentive listening and authentic contact

  • Invite partners to share their perspectives

  • Ask open-ended questions and probes

  • Give feedback on contributions

  • Emphasise the importance of personal experiences and provide reassurance

Feeling unable to contribute
  • Lack of knowledge about research and statistics

  • Problem with medical jargon

  • Problem with the English language

  • Hierarchy of professions

  • Power imbalance

Tailor support to the competencies of the partners
  • Provide lay summaries

  • Create a learning environment: provide training opportunities

  • Distribute reading materials before meetings

  • Explain jargon without being asked

  • Provide glossaries, journals and websites

  • Help partners access and judge scientific literature

Feeling disqualified, not listened to
  • Feeling muddled about inappropriate disclosure

  • Feeling dismissed when an initiative to contribute is ignored

Be alert for sensitive issues
  • Partners want to be regarded as individuals, from a holistic perspective

  • Try to be inclusive

  • Respect confidentiality and apply ethical rules

  • Acknowledge contributions