PPI 2015 Unit II: Barriers to effective involvement

PPI 2015 Unit II

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.