Codesigned care improvements recommended by patients and providers, and representative quotes
| Care improvement | No. of votes | Illustrative quote*† |
|---|---|---|
| Rapid | ||
| Top 4 recommendations | ||
| Delegate care to nurses and nurse practitioners | 10 | In our group, we were talking about interdisciplinary teams. It’s up to each clinic to decide how to delegate different medical acts, certain preventive activities, women’s health. (Provider) Delegate certain professional acts, for example, to nurse practitioners: as much for you [doctors] as for us [patients]! It could be a solution that is relatively quick. (Patient) |
| Make space for community within HIV clinics and at different levels of decision-making | 8 | Open the doors so women living with HIV could sit on decision-making committees, at the Ministry of Health, at the governmental level … it’s possible. (Patient) Get the community within the clinic. … For sure, this is delicate, but I know that when we add a new service to a team, at first everyone is quite uncertain, but after some time it finds its place, and those people then become essential. (Provider) |
| Creation of a women’s health information booklet | 8 | The second thing is a booklet or information package on comprehensive care for women, and it would have information on HIV appointments for tests (Pap [test], mammogram, etc.). And the frequencies, because sometimes we forget, or we don’t know. (Patient) So women gain responsibility, or to raise awareness among women, because it is also up to me to take charge of my health. (Patient) There’s a lot of emphasis on care guidelines for doctors and nurses. But what about a little care passport for women that they have themselves? Like a vaccination booklet. Women could say “Listen, I’m due for my Pap test.” (Provider) |
| Training and education for all care providers | 7 | There should be awareness-building and knowledge-transfer workshops for care providers, nurses, doctors, etc., who are not in the HIV sector. … Because if they know how it gets transmitted, then they will be less afraid. (Patient) There’s [a provincial initiative] trying to implement provincial training so that a person in [rural Quebec] can go online and get the training on “HIV 101.” Outside of Montréal, there are so few [people living with HIV], so it’s not so much a lack of interest as misconceptions, and then it’s scary: “I don’t really want to get too close because I don’t understand.” So what we are doing is having a designated person in each family medicine unit who is [trained] in substance use, hepatitis and HIV, to increase the confidence levels with these disorders. (Provider) We have to remind ourselves that, for many women, their HIV doctor is the only doctor they see … the HIV care providers should also be women’s providers for their comprehensive care needs. (Provider) |
| Other recommendations | ||
| CHIWOS researcher should present research results | 2 | The CHIWOS researchers should present results to each multidisciplinary team so that they can then make concrete tools to improve their care practice. … Just having this discussion this afternoon wakes us up to what we could all do in our clinics, but I think it could be broadened by going to each clinic. (Provider) |
| Creation of resources booklet to facilitate communication among providers | 2 | Like a list of resources … for providers to be able to orient patients adequately within the health care system and avoid instances where they feel discriminated against, while we wait for education to be done. (Provider) |
| Longer-term | ||
| Top 3 recommendations | ||
| Full financial coverage of antiretroviral therapy in context of U=U | 11 | I agree that it would take a lot of political will and a lot of work, but the moment it is implemented, it will change the entire landscape. (Provider) Full coverage of other health services and, most importantly, ART. (Patient) |
| Health service coverage | 10 | Free access to mental health services for people living with HIV. (Provider). People should have access to care like physiotherapy or kinesiology or something like that, if [the problem is] following side effects of the medication or is due to HIV itself. (Patient) |
| U=U public campaign | 8 | We would really appreciate if public health — so, starting from the top instead of from the ground up — if they’d continue to inform the population on HIV, but to do so around U=U, and that it be widely diffused to the whole population, so that the message is received more effectively. (Patient) There are challenges regarding HIV knowledge, the lack of overall HIV knowledge of care providers in the health care system. And it’s true that, at the ministry level, there is not a lot of efforts being made for U=U. Sure, it’s new, but still, there is a lack of knowledge. Even just that HIV is a chronic disease now. We need to be doing whole-person care. (Provider) |
| Other recommendations | ||
| Facilitate family doctors as care providers | 3 | I’m a huge advocate for family doctors to continue to do routine HIV follow-up, because it brings a comprehensive care approach, and it’s a specificity that we have here in Quebec that isn’t everywhere. … HIV clinics, in my opinion, should really have an approach that is much more a chronic disease approach, like diabetes, like hypertension. (Provider) |
| Outreach nursing care | 2 | This might not be required for everyone, but outreach nursing care or follow-up care by phone [should be available]. For people to not always have to be the ones travelling, sometimes there are things that can be done by phone, or some blood draws that don’t need an appointment. (Provider) [Outreach nursing care] is already offered for active drug users, but for the woman who is a single mom, working — well, her, she needs to come in for an appointment. (Provider) |
| Mandatory health days within labour codes | 1 | Employees are quite hesitant to ask for time off on a pretty regular basis. They don’t want to make their employer think that they have something. (Provider) |