7. Lesson 2 Barriers and facilitators

7.1. Barriers to effective involvement

  • Most people don’t know that opportunities for involvement in research exist.
  • Unequal power relationships: patients who get involved lack confidence to speak.
  • Lack of awareness and understanding among researchers of the need for and value of patient and public involvement.
  • Unsupportive and overtly hostile team members.
  • Lack of resources to support involvement, including researcher time and an adequate budget.
  • Tokenistic involvement.
  • Meetings held in working hours may exclude patients who work or have caring responsibilities.
  • Poor communication about the research and lack of time given to help patients to understand their role or research methods and terminology.
  • Patients who have difficulty widening their perspective from their own individual experience to the bigger picture.
  • Patients who have a particular issue they can’t let go of – often related to a poor experience of healthcare.