A project to increase engagement of people living with HIV in improving the quality of HIV care in the Caribbean, reported in the journal Global Health: Science and Practice, showed that increased mutual understanding and empathy between people living with HIV and health care providers can be achieved in regions with poor records of engaging people living with HIV in improving health care services. Bringing people living with HIV onto quality improvement teams in Caribbean countries with poor histories of patient involvement increased health providers’ attention to issues such as strengthening patient confidentiality and protecting people living with HIV from harassment from other patients.
The evaluation concluded that successful engagement of people living with HIV requires planning for real, consistent and equal participation of patients at all levels of programme development and evaluation. It also requires a new culture of and language for engagement. People living with HIV should be given clear leadership roles, and both people living with HIV and health care providers need to learn new skills and develop insights into each other’s lived experience and perspectives. These can help to counter the power differences between patient and provider that are typical of health care delivery.
While essential for improving care for people living with HIV, patient engagement occurs more frequently in high income countries than in low and middle income ones. Marginalised and stigmatised groups are more likely to experience poor health and/or be at risk of developing health conditions but less likely to be included in engagement efforts. In the Caribbean, health care providers rarely involve people living with HIV as equal members of a health care team, and stigma and discrimination against people living with HIV, and towards gay men, transgender people, and sex workers in particular, constitute significant barriers to engagement.
To determine how health care providers and people living with HIV can best collaborate on an equal footing to improve the quality of care, researchers at the University of Washington initiated the Caribbean Regional Quality Improvement Collaborative. The Collaborative supported a team-based approach to addressing barriers to high-quality health care. It trialled a strategy of including people living with HIV in quality improvement teams in Jamaica, Barbados, and Trinidad and Tobago. The goals were to develop quality improvement initiatives that aligned with patient priorities, enabled patient leadership and recruitment, decrease HIV stigma and discrimination in healthcare settings, and improved health outcomes among people living with HIV in the Caribbean. The programme was rolled out as part of a 2015-2017 effort to improve viral suppression among people living with HIV. People living with HIV involved in the project asked to be called community representatives.
The project applied an approach called plan-do-study-act, involving rapid, small-scale tests of change in clinic processes. They adapted and evaluated interventions developed in other contexts, and ultimately selected those interventions that were most effective in improving the quality of patient care.
The project brought teams of health care practitioners and people living with HIV together for learning sessions. These sessions taught methods for achieving quality improvement, and hosted conversations about the results of their quality improvement work. Those attending these sessions also encouraged and motivated each other in their quality improvement efforts. Between learning sessions, teams received expert coaching, participated in webinars, and tested out interventions developed elsewhere.
Outcomes: increased engagement, understanding, empathy, and empowerment
Historically, uncertainty about what the term engagement means leads many health care providers to include people living with health conditions, and/or their advocates, as consultants rather than as meaningful collaborators. This project succeeded in engaging people living with HIV as equal partners in quality improvement.
Community representatives reported participating in changes designed to improve services. They described how participating in the programme empowered them and made them feel more prepared to engage in and advocate for better care for people living with HIV. The safe spaces offered by quality improvement teams and learning sessions made them feel comfortable in offering their ideas and sharing their HIV status. They also felt that their unique perspectives were valued, and that their increased knowledge about quality improvement made them better able to contribute to the process of improving patient care.
“Participating in quality improvement activities . . . I feel so empowered now, a part of the whole team. I know I can just go in and give suggestions . . . Before now, it just felt like they [health care providers] did what they were doing and we came and accessed whatever they did. But now we have our role, we have a say, and they actually listen . . . and apply other things that we say.”
“One of the main takeaways is the fact that the community has such a huge say and can be empowered to assist in the changes that impact us. Change in a system cannot be from the top down. It can come from any status, any level, and can be wide reaching—whether doctors or patients—to make change.”
As a result of this initiative, community representatives gained a new appreciation for health care providers’ commitment to good medical care, which had been hidden by the “us versus them” divide between patient and provider. They described health care providers becoming “warmer”, “less impersonal”, and more interested in their unique viewpoints as people living with HIV. One contrasted the care they had received before the programme with the health care providers’ new approach:
“You really care that you’re doing this to help me … Instead of just doing it because it’s your job”.
“A lot of times we have stigma thinking that these people [health care providers] are against us, you know, and they are just there because they are doing their job. They really want to see persons survive and live as healthy of a life that they can. That was encouraging.”
Health care providers also described changes to their previous perspectives and practices as a result of their participation in the project. While they had lacked systematic methods of gathering patient feedback, the programme helped them to engage with patients on a regular basis and consider – and seek out – their perspectives. After participating in the programme, most teams began to meet with their community representatives at least once per month, including between scheduled meetings.
Health care providers overwhelmingly supported community representatives’ contributions. They felt that their unique perspectives were as important their own, and that their feedback helped to ensure that improvements spoke to patients’ needs, created a more enabling environment for patients, and addressed stigma and discrimination. Several had already or were planning to recruit more community representatives to join their teams. As one health care professional said:
“[I]t is good to get the client’s viewpoint because that is the reason for the clinic . . . you want to provide a service that the client appreciates. Their viewpoint, it helps to keep you grounded and remind you what you are doing . . . it is good to have that reminder.”
Health care providers stated that the new empathy and awareness they gained from working with community representatives led to improvements in patient care by guiding their own practice. One described becoming “a little bit more attentive to some of the things that are said, particularly within the MSM population . . . I know how to better state certain things, how to better ask to get more [information] to be able to make an impact”. Other changes included adopting concrete strategies to ensure patient confidentiality, comfort, and convenience. For example, they reduced clinic waiting times to reduce exposure to other patients, who had sometimes harassed patients seeking HIV care, and removing patient identifiers from HIV patient sign-in sheets.
Challenges and recommendations
Despite these successes, the researchers identified barriers to full participation. Community representatives found it difficult to advocate for their own ideas as they were often the only representative on the team. Health care professionals with less exposure to learning sessions were more resistant to their ideas and to the concept of patients as partners. Some community representatives found it difficult to attend team meetings during normal working hours, and unemployed representatives lacked transportation to meetings. These barriers to full participation risked compounding existing inequalities that the programme had sought to remedy.
The study team identified conditions essential for successful patient engagement. Programmes designed to achieve genuine patient engagement must build a common language and a culture for improvement, including addressing practical challenges to participation such as work conflicts and transportation needs. The authors describe established power differences in health care systems, whose culture of care fails to include patient perspectives and voices. They suggest that these should be replaced with a culture of engagement that provides patients with the confidence to identify opportunities for improvement to health care providers and advocate for their adoption. Patients should be given the opportunity to develop both the technical knowledge they need to communicate their ideas and concerns to health care providers and their capacity to act as partners in designing and implementing change. They should also be given clear roles in quality improvement teams, and leadership positions that can help to counter the hierarchies that have traditionally limited their role in advocating for improvements in their care.
Bluemer-Miroite S et al. “Nothing for Us Without Us”: An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean. Global Health: Science and Practice 10: e2100390, 2022 (open access).