Table 2.
Summary of facilitators and barriers of patient engagement
| 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 | |