Enhancing the delivery of comprehensive care for people living with HIV in Canada: insights from citizen panels and a national stakeholder dialogue | Health Research Policy and Systems

Our goal was to spark action to address these challenges by convening deliberations across Canada with people living with, at risk of and affected by HIV, and with system leaders (policymakers, stakeholders and researchers) who could champion needed changes. To do this, we convened: (1) citizen panels with people living with, at risk of and affected by HIV to learn about their views of and experiences in relation to these challenges and their values and preferences for policy options to address the challenges and (2) a national stakeholder dialogue with HIV health system leaders to identify steps that can be taken to address the challenges. The approaches used for each are described in detail in the separate documents we have published, which include a citizen brief, panels summary, evidence brief and dialogue summary [19,20,21,22]. We provide a concise overview of our approach below. In this paper, we integrate the findings from both components to provide insights from citizens and system leaders about the important next steps identified for enhancing comprehensive care for people living with HIV in Canada.

The project was led by an interdisciplinary steering committee, which included people living with HIV as well as policymakers, clinicians and researchers with expertise in HIV-related policy, care and support. The committee guided the project from start to finish, including establishing the scope of the project, providing feedback on the citizen and evidence brief, identifying key informants to engage to provide feedback on the citizen and evidence brief, shaping the recruitment criteria for the citizen panels, identifying participants for the stakeholder dialogue and providing feedback on the analysis of the deliberations.

First, we convened three citizen panels in 2019 in Manitoba (March 22), Ontario (April 5) and Newfoundland and Labrador (April 22) that sought to engage participants from each Canadian province. Each panel was informed by a plain-language citizen brief that described what is known on the basis of data and evidence and insights from 25 key informants [19, 21]. The deliberations focussed on describing the underlying problem related to enhancing comprehensive care for people living with HIV in Canada, three possible elements of an approach to addressing the problem, and implementation considerations for the elements. Panellists were recruited through the AskingCanadians™ panels, which include more than 600 000 Canadians that are affiliated with loyalty programs in Canada and are representative of all the Statistics Canada demographic categories. We sought to engage 14–16 panellists living with or affected by HIV for each panel who were diverse in terms of gender, age, sexual orientation, socioeconomic status, ethnocultural background and geographic residence (both in terms of provinces they live in and from urban, suburban and rural/remote settings). The deliberations were facilitated by one of two team members (MGW and CM) and followed the structure of the citizen brief. We summarized key insights from the panel using themes that the facilitators identified and refined from their detailed notes in each panel. Within panels, these themes were discussed and refined with panellists through mid-day summaries that were reviewed and discussed. In addition, our wrap-up deliberations for each were used to debrief with the panellists to ensure that we accurately documented and understood the experiences, values and preferences that were articulated during the deliberations. We also used this time to ensure that areas of common ground and divergence were accurately captured and framed in a way that reflected the deliberations. We continued to identify and refine themes through subsequent panels and used our detailed notes to capture areas of consistency across panels, as well as insights that were unique to a particular panel. After all of the panels were convened, we selectively revisited recordings to ensure accuracy of notes, themes identified and illustrative quotes.

In May 2019, we convened a stakeholder dialogue that was informed by pre-circulated evidence brief [22] (a more detailed version of the citizen brief), which included key findings from the panels. We identified participants in collaboration with the project steering committee on the basis of their ability to: (1) bring unique views, experiences and tacit knowledge to bear on the challenge and learn from the research evidence and from others’ views, experiences and tacit knowledge and (2) champion actions that will address the challenge creatively. The dialogue concluded with a focus on potential next steps that could be taken. Deliberations were facilitated by one of us (MGW) with detailed notes and observations taken by the facilitator and one secretariat (KW), which were used to prepare an analysis of key insights from the deliberations [20]. This included a draft summary of key themes that we provided to all dialogue participants to reflect on before the dialogue was completed. The stakeholder dialogue was convened “off the record” and adhered to the Chatham House Rule (participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed) and therefore deliberations were not recorded.

Key insights from citizen and stakeholder engagement

The citizen panels convened 31 ethnoculturally and socio-economically diverse people living with or affected by HIV from all provinces except Saskatchewan (demographic information provided in the panel summary) [19]. Demographic information of panellists is provided in Table 1. The stakeholder dialogue convened 21 participants, which included people living with HIV and Indigenous people. While most participants held several positions, the principal roles included five federal- and provincial-level policymakers and/or leaders of a health region, five leaders of community-based HIV organizations, five leaders of stakeholder groups (including professional organizations, national and provincial-level groups and citizen-based groups) and six researchers (most of whom were also clinicians).

Insights about challenges related to the problem

Panellists identified eight challenges, which are summarized in Table 2 and include: (1) lack of comprehensive supports for HIV prevention, (2) limited access to point-of-care testing, (3) stigma is pervasive and layered, (4) lack of public awareness and education to address stigma, (5) privacy and confidentiality in testing and care are not respected, (6) limited access to social-systems supports, (7) the problem is magnified for the most vulnerable and (8) lack of timely data and use of evidence in policy decisions.

Dialogue participants agreed with these challenges, and expanded the list to include:

1. (1)

   social and structural challenges including stigma and discrimination are fundamental to address, but continue to lack traction and commitment to change;

2. (2)

   lack of emphasis on prevention and making available a broad menu of testing options that meet the needs of different communities;

3. (3)

   lack of coordination across care pathways and throughout the lifespan;

4. (4)

   limited access to timely data and the many different forms of evidence needed to inform policy and programmatic decision-making; and

5. (5)

   mechanisms and resources not being in place to support learning across provinces, territories and Indigenous communities.

Insights about elements of a potentially comprehensive approach to address the problem

Citizen panellists and dialogue participants deliberated about three pre-circulated elements of a potentially comprehensive approach to address the problem: (1) strengthening comprehensive HIV care within the health system; (2) providing supports across social systems to address all of the challenges faced by people living with HIV; and (3) adopting a rapid-learning and improvement approach to incrementally strengthen health and social systems. These elements and evidence about them are detailed in the publicly available evidence brief [22]. Values and preferences from citizens and insights from system leaders are summarized in Table 3.

Overall, citizens emphasized the need to provide equitable access to integrated comprehensive care to enable people to achieve optimal outcomes regardless of where they live and the challenges they face. Moreover, citizens consistently identified supports across social systems to address the full range of challenges faced by people living with HIV as being the most fundamental, yet potentially most difficult to achieve. In addition, it was identified that actions towards strengthening social systems should be prioritized over others as it will help address challenges (e.g. housing, poverty and stigma) that put people at risk for HIV and make getting diagnosed and engaged in care challenging. Lastly, despite initially struggling with the concept of rapid-learning health systems, there was consensus about the importance of making small yet rapid changes to improve HIV care and supports over time as it was viewed as more achievable than trying to reinvent entire health and social systems.

System leaders in the stakeholder dialogue participants emphasized the need for a combined health and social-system approach to strengthening care for those with HIV. Participants specifically called for a greater role for team-based care that prioritizes mental health and addictions services, and for care that is culturally competent, safe and responsive.

They also identified four themes requiring action: (1) acknowledging that HIV continues to be unique and needs to be accounted for in the pursuit of any next steps; (2) ensuring person-centred and adaptive approaches for strengthening comprehensive HIV care in health systems and providing supports across social systems; (3) underpinning all actions taken with enhanced efforts to address stigma and normalize HIV prevention, testing, care and support; and (4) focussing on achieving the Triple Aim of excellent patient experience, improved patient outcomes and keeping per capita costs manageable.

Implementation considerations

Dialogue participants also identified several implementation considerations that are likely to affect efforts to champion the necessary changes. These potential barriers included: (1) funds traditionally being siloed across government programs in health and social systems, which limits the ability flow funds to support integrated whole-person care; (2) power imbalances between different organizations and stakeholders (e.g. hospitals and credentialed professionals as compared with community and non-credentialed providers), which may make integration difficult; (3) challenges in navigating different priorities and languages used across health and social systems and the sectors within them; and (4) potential perceived delays and/or lack of action due to embedding HIV targets under the broader Pan-Canadian STBBI framework.

Next steps identified by system leaders

Stakeholders were willing to invest in several next steps, including to:

1. (1)

   focus on improving delivery of prevention, care and support and to achieve the 90–90–90 targets, adding a fourth 90 focussed on improving quality of life, and the goals in STBBI framework (while recognizing the unique and often more complex needs of those in the remaining 10% of each of the targets);

2. (2)

   continue to strengthen primary-care-based models emphasizing person-centred care (and include the full complement of primary-care-based providers, such as physicians, nurses and pharmacists);

3. (3)

   identify groups of individuals with shared challenges that can be collectively supported, and shared strengths that can be built upon; and

4. (4)

   create wrap-around social services and primary care, and inject primary-care elements into social-systems settings (e.g. housing, supervised-injection sites and prisons).