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Table 2 Summary of facilitators and barriers of patient engagement

From: Engaging patients to improve quality of care: a systematic review

Facilitators

Barriers

Design of engagement

 1. Techniques for enhancing patient/carer input

   Enable patients or carers to set the agenda

   Enable patients or carers to participate in all/most stages of the research (participatory action research)

   Include higher proportions of patients versus providers to enhance patient voices

   Offer flexibility in the levels and approaches of involvement

   Build in reward mechanisms such as feedback and evaluation

   Set opportunities for interaction at regular frequencies

   Overly complex discussions

   Onerous, time-intensive involvement

   Inclusion of:

    A disproportionate number of patients compared to providers

    Providers who previously cared for the patients in the meeting/committee

    Groups of individuals with existing hierarchical structures

 2. Creating a receptive context

   Use of democratic dialog to build consensus

   Use of external facilitation and trained facilitators

   Conduct training sessions prior to engagements to clarify roles, objectives, develop skills, increase sensitivity to cultural or community issues and reduce power imbalances

   Maintain flexibility in aims, design, and outcomes in response to patients’ input

   Enable time to develop strong and trusting relationships

   Create environment where participants are able to communicate in the language of their preference

   Lack of clarity on:

    Roles

    Objectives

    Responsibilities

 3. Leadership actions

   Secure institutional commitment and sponsorship for engagement

   Involve institutional leadership

   Conduct engagements before decision have been made

   Establish mechanisms to act on issues raised and to continue involvement

   Demonstrate progress occurring between meetings

   Engagements conducted by consultative groups, not decision-makers

   Lack of response or plans to address issues raised

   Lack of follow-up with patients after their participation

   Policies and procedures misaligned with participation, recommendations or outcomes

Sampling of participants

 1. Techniques for enhancing patient/carer input

   Have patients conduct interviews with fellow patients, when possible

   Strive for a wide representation of patients at all stages

   Identify and recruit users through providers, existing users, networks

   Offer incentives (monetary and other), stipends, reimbursement of expenses

   Provider- or patient-led recruitment can introduce biases

   Inclusion of self-selected, participants:

    Confident patients

    Those who have fewer symptoms or family care duties

   Inclusion of proxy groups:

    Parents to represent children

    Carers to represent patients

   Ethical concerns regarding recruitment and consent of participants with intellectual or physical disabilities

 2. Creating a receptive context

   Consider setting: engage patients at home, in their facilities or in environments outside where services are delivered to increase participation and comfort

   Lack of participant commitment

   Lack of participant confidence

   Inclusion of providers:

    Who are skeptical towards involving patients

    Who feel threatened by devolving power

    Whose behavior does not promote user participation

 3. Leadership actions

   Emphasize to patients that there is organizational commitment/sponsorship of the engagement of patients