Table 1

Summary of barriers and enablers for involvement27

Key exclusionsKey barriersOvercoming barriers
Equality and discrimination: barriers on the basis of gender, ethnicity, culture, belief, sexuality, age, disability and class.Devaluing people: not valuing or listening to what people say.Access: ensuring all participants have effective ways into organisations and decision-making structures to have a real say in them.
Where people live:
In residential services.
In prison and the penal system.
Tokenism: asking for involvement but not taking it seriously or enabling it to be effective.Support: building confidence/skills, offering practical help/opportunities to get together to support people's empowerment and capacity.Use of advocacy: important for people who are disempowered and isolated.
Communication issues:
Deaf people.
Blind/visually impaired people.
People who do not communicate verbally.
People for whom English is not their first language.
Unwanted voices: Some points of views/experiences are more welcome than others (particularly those who agree or are less challenging of the system or services). People can also be excluded because they are seen as too expensive/difficult to include such as those with dementia.
Stigma: stigmatising people for their identity or why they became involved or because they have had a poor experience of care35 and discouraging involvement on the basis of their identity.
Confidence and self-esteem: making people feel they do not have much to contribute.
Inadequate information about involvement:
Lack of appropriate and accessible information about getting involved or about the involvement opportunities.36
Different forms of involvement: using innovative approaches that go beyond traditional methods: meetings, surveys, written and verbal skills. Different methods include: entertainment organised by lay participants, offering safe opportunities to explore ideas. Supportive activities, informal venues and encouraging networking.
Outreach and development work: reaching out to those traditionally identified as ‘hard to reach’, going to them and community leaders, building trust, asking what works.Meetings where used: making them attractive, inclusive, enjoyable, with free refreshments that are culturally appropriate, safe, supportive environment, with access to key knowledge.
Issues of poor health literacy:
this can be an important determinant of access to healthcare, impacting upon patients ability to book, cancel/attend appointments, respond to an adverse error in their care or medication or a deterioration in their care.37
Gatekeepers/individuals who block the involvement process: individuals who obstruct the involvement process by their attitudes or actions and stop people getting involved.Tools to support patient empowerment38
Motivational interviewing: used by clinicians/non-clinicians, personal budgets, expert patient (self-management) programme, patient decision aids in shared decisions, helping people prepare for consultations, access to health records.
Achieving greater health literacy in the population is integral to improving the health of disadvantaged populations and to tackling health inequalities.23Financial barriers: not paying participants for their involvement (which is a widely accepted principle) and speedily can deter people with limited resources or high costs because of the nature of their situation or impairment from being involved.Good practice regarding health literacy37
Improving communication with all patients can include: ascertaining what the patient knows first to determine level of discussion.
Speaking slowly, avoiding jargon, repeating points to improve comprehension, encourage and expect all patients to ask questions.Check understanding and recall. Ask patients to repeat back critical info (making clear this is about the health professionals’ ability to communicate clearly). Communicate in ways other than speech/printed material, eg, multimedia, translation services/materials.