Beyond community engagement: perspectives on the meaningful involvement of people with HIV and affected communities (MIPA) in HIV cure research in The Netherlands

Figures & data

Table 1. Descriptive statistics for sociodemographic variables.

	M (SD); min–max	N (%)
People with HIV		30 (35.5%)
Age	49 (14.531); 27–78
Gender identity
Cisgender man		19 (63.3%)
Cisgender woman		10 (33.3%)
Transgender woman		1 (3.3%)
Sexual Identity^a
Gay		17 (56.7%)
Bi		3 (10.0%)
Straight		10 (33.3%)
Migration background^a		7 (23.3%)
Years living with HIV	21 (13.279); 2–42
Diagnosed before 1997^b		13 (43.6%)
Diagnosed between 1997 and 2018		14 (46.7%)
Diagnosed after 2018		3 (10.0%)
ART use
Yes		30 (100%)
Years without ART	3.5 (5.865); 0–24
MSM		19 (22.4%)
Age	35 (10.268); 24–55
Gender Identity
Cisgender man		19 (100%)
Sexual Identity^a
Gay		16 (84.2%)
Bi		2 (10.5%)
Other		1 (5.3%)
PrEP and PEP use
Has used PrEP		12 (63.2%)
Has used PrEP and PEP		1 (5.3%)
Has not used PrEP or PEP		6 (31.6%)
Migration background^a		6 (31.6%)
Partners of persons with HIV		16 (18.8%)
Age	49 (13.032); 26–66
Gender Identity
Cisgender man		12 (75.0%)
Cisgender woman		4 (25.0%)
Sexual Identity
Gay		10 (62.5%)
Straight		6 (37.5%)
PrEP and PEP use
Has used PrEP		8 (50.0%)
Has not used PrEP or PEP		8 (50.0%)
Migration background		2 (12.5%)
Key informants in healthcare		20 (23.5%)
Age	51 (9.017); 36–65
Gender Identity
Cisgender man		13 (65.0%)
Cisgender woman		7 (35.0%)
Years active in the HIV field	18 (9.943); 5–39

^a Key informants in healthcare were not asked about their sexual identity or migration background.

^b Diagnosis cutoff is based on the introduction of highly active antiretroviral therapy (HAART) in 1996.

Table 2. Quotes regarding meaningful involvement of people with HIV and affected communities in HIV cure research.

Theme	Sub-theme	Participant type	Gender identity	Age	Additional information	Quote number	Quote
Awareness of MIPA	Current efforts	Person with HIV	Cis man	31	Diagnosed with HIV in 2020	1.	I don’t dare to say because this [interview] is the first research that I have come across.
Awareness of MIPA	Current efforts	Person with HIV	Cis man	27	Diagnosed with HIV in 2018	2.	I actually have no idea [about current MIPA efforts], to be honest. I don’t know. […] I’m participating in this interview
Awareness of MIPA	Current efforts	Key Informant	Cis man	51		3.	Since recently we have a panel of people with HIV who make a statement about various submitted proposals when it comes to ‘what is the importance, what are tips to improve it, what might the researcher not have thought of, how could it be expanded?’.
Awareness of MIPA	Current efforts	Key Informant	Cis man	59		4.	There are of course a number of initiatives in which the Dutch HIV Association is involved in the development or the design of the research, but also people who are not part of an association but who contribute ideas as patients or clients […] I think NL4Cure is also such an initiative in which I think people with HIV are involved.
Awareness of MIPA	Current efforts	Key Informant	Cis man	43		5.	I think the most important example is NL4Cure in the Netherlands where the Dutch HIV Association is also involved, where involvement is one of the four goals, even the first. We ask about the importance of a cure for people with HIV and we keep them informed. People need to be informed. You will eventually achieve your goals.
Awareness of MIPA	Current efforts	Key Populations [Non-Partner]	Cis man	27		6.	I think very little is done [to involve MSM in HIV cure research], at least from what I gather […] if it happens, then I think I am not exposed to it.
Awareness of MIPA	Current efforts	Key Populations [Non-Partner]	Cis man	37		7.	Actually, I know very little about that [efforts to involve MSM in HIV cure research], I must say. Apart from the channels that I receive as an activist, you know, I don’t get much of it. And then I think to myself: if I already get little information, how little awareness must others have?
Awareness of MIPA	Current efforts	Key Populations [Partner]	Cis man	40		8.	I have never heard about it [involving partners in HIV cure research]. My partner also has never told me about it.
Awareness of MIPA	Misconceptions	Person with HIV	Cis man	39	Diagnosed with HIV in 2008	9.	You should really take people along the journey, from ‘okay this is where we are now, this is what we know about the virus, to this is where we are in the trials, we’re researching if, for example, we can elicit it and what that elicitation looks like, and this is what we’ve found so far, which helps us understand, but we need to conduct further research in this area, which could be a next step.’.
Awareness of MIPA	Misconceptions	Person with HIV	Cis woman	51	Diagnosed with HIV in 1992	10.	Well, what we’re doing now, these interviews, that’s very nice. And further trials on test subjects at the AMC [hospital] are being conducted, but these are usually men who are interviewed there, and they also receive a comprehensive examination of blood values, health, condition, and they will then be followed for a few years to see what can be done to contribute more to someone with HIV. Not much [is being done], yes trials, guinea pigs, involving us in research about what come in the future
Awareness of MIPA	Misconceptions	Key informants	Cis woman	51		11.	Through interviews, I think [get people involved in cure research]. […] The research takes place with HIV patients, so if you want to motivate them to participate in research, you will also need to know in advance how to motivate them. By interviewing them […] You can approach and ask them about this subject in all kinds of ways and ask them about their knowledge in this area, but also their expectations, their vision, and any fears. The best way to do that is by interviewing them extensively. That seems to me to be an appropriate method to clarify that.
Awareness of MIPA	Misconceptions	Key Populations [Partner]	Cis woman	63		12.	I find it quite hard to say to be honest. Yeah, I actually just don’t know what it precisely entails
Awareness of MIPA	Increase in MIPA efforts	Key Informant	Cis man	56		13.	It has been getting better and better. In all kinds of research, you see people with HIV being involved from the get-go. People with HIV are even involved when writing a [research] proposal and that just makes the research much better.
Awareness of MIPA	Increase in MIPA efforts	Key Informant	Cis man	36		14.	I think more and more is being done about it. […] in our cure research […] we have had a connection with the Dutch HIV Association for some time.
Awareness of MIPA	Increase in MIPA efforts	Key Informant	Cis man	51		15.	An example from my own work - we’ve recently introduced a patient panel at every research evaluation. […] essentially, it’s a panel of individuals living with HIV who provide feedback on the various proposals. They consider factors such as the significance of the research, suggestions for improvement, potential oversights by the researcher, and ideas for expansion.
Awareness of MIPA	Involvement of community and patient organizations	Person with HIV	Cis woman	64	Diagnosed with HIV in 2000	16.	[…] perhaps through the Dutch HIV Association [Dutch HIV Advocacy Organization] where many people are also HIV positive. Perhaps they will be involved or through Aidsfonds [Dutch HIV funder] they also have people who have HIV. They may also be involved. Further, in my personal contacts with others, I have not heard of them being involved. But that might come, I don’t know. One wouldn’t be able to put money on it.
Awareness of MIPA	Involvement of community and patient organizations	Person with HIV	Cis woman	55	Diagnosed with HIV in 1983, has a migration background	17.	I can imagine that the Dutch HIV Association is involved, or at least lobbies to stay and be involved, so to say. But other than that, I really don’t know.
Awareness of MIPA	Involvement of community and patient organizations	Key Populations [Non-Partner]	Cis man	27		18.	I can imagine it [attempts to involve people with HIV and affected communities] happens, perhaps at the municipal health services […]. There is also the COC [Dutch LGBT organization] and other organizations that deal with this. So perhaps it [attempts to involve people with HIV and affected communities] happens there.
Importance of MIPA	Lived experiences	Person with HIV	Cis woman	48	Diagnosed with HIV in 1996, has a migration background	19.	I think people with HIV should be involved. That you have the opinion, the experience, the experience with the virus itself, with what you do, with medication and you can compare that […] with the results that come from research. In that sense. And also taking medication and side effects, yes, I think that is very important.
Importance of MIPA	Lived experiences	Person with HIV	Cis woman	55	Diagnosed with HIV in 1983, has a migration background	20.	A researcher or, you also notice it with a physician, they just can’t think of everything. He doesn’t know what it’s like to have something make you so nauseous or… So, in theory things may seem very nice, but if in practice it turns out that something is very demanding, you can take that into account for next time.
Importance of MIPA	Lived experiences	Key Informant	Cis man	56		21.	‘Nothing about us without us.’ That’s so obvious to me. If you want to have very good HIV care, good HIV prevention, and improve the quality of life for people with HIV, then you need people with HIV, because they know what it is all about, they are also the experts in living with HIV.
Importance of MIPA	Consequences	Person with HIV	Cis woman	62	Diagnosed with HIV in 2014	22.	[…] involving everyone everywhere, discussing and providing feedback, and moving forward from there. It does mean taking an extra step each time […]. But I believe that, ultimately, this will reach more people and find more individuals willing to engage with research. It also involves exploring potential cures and thereby building more trust in the ultimate outcome. If a cure is found, it should involve people with HIV right from the start, in every aspect. […]. I believe it will greatly benefit the scientists in their efforts.
Importance of MIPA	Consequences	Key Informant	Cis man	50		23.	Especially in cure research, it is important to know whether people are interested in the outcome of the research at all. […] then the researchers also know ‘we can go in this direction, but ultimately this research will not lead to people taking part in it [a cure for HIV].”
Importance of MIPA	Prerequisites	Person with HIV	Cis man	39	Diagnosed with HIV in 2008	24.	[…] most important to involve them [people with HIV], […] trust in research, without trust in life you have nothing. Even if you have a great remedy. So, it’s about trust, clarity, transparency.
Importance of MIPA	Prerequisites	Key Informant	Cis man	56		25.	You have to ensure If there is trust and if people understand each other […] then you just get better research
Importance of MIPA	Prerequisites	Key Informant	Cis man	39		26.	It is especially important that you really involve [people], that you are sincere. For me that entails clarifying your intentions […]. And that you respect the people you are asking [feedback] from.
MIPA in cure research	Roles of people with HIV	Person with HIV	Cis man	44	Diagnosed with HIV in 2021	27.	I do think that people should listen carefully to what the needs are, so the research that you conduct is definitely good and in my opinion that also helps the researchers to conduct research in a direction that is also desirable.
MIPA in cure research	Roles of people with HIV	Person with HIV	Cis man	66	Diagnosed with HIV in 1995	28.	[…] y can also use these people [people with HIV]. […] they are kind of ambassadors or conduits of information to others […] then you are like an expert by experience so to say, then you’re involved.
MIPA in cure research	Roles of community and patient organizations	Person with HIV	Cis man	30	Diagnosed in 2015	29.	I just wonder you can’t involve all people with HIV in that [cure research], but I think it’s important to involve patient associations and maybe other focus groups.
MIPA in cure research	Roles of community and patient organizations	Key Informant	Cis man	56		30.	People need to be informed about everything that is happening. The Dutch HIV Association also has an important task in ensuring that good up-to-date information is available for people with HIV.
MIPA in cure research	Roles of community and patient organizations	Key Informant	Cis man	36		31.	I think that throughout the entire scientific process, it is important to reach out to people. This can be through representatives of the community, or organizations.
MIPA in cure research	Early involvement	Key Informant	Cis man	65		32.	I think it’s really important to have the people [with HIV] involved from the start, so even with the questions of 'how should we set it up? How should we communicate that? What would be acceptable.
MIPA in cure research	Early involvement	Key Informant	Cis woman	62		33.	[…] my appeal to every researcher who is working on a cure, on HIV, is to seek contact, and establish maintain contact with people with HIV at a very early stage.
MIPA in cure research	Involvement of key populations	Key Populations [Partner]	Cis man	64		34.	Yes, it [involving partners] depends on how they interact with each other. We are interested in each other, but there are also partners who say: well, that’s your thing, I don’t have it, so toodeloo.
MIPA in cure research	Involvement of key populations	Key Populations [Non-partner]	Cis man	26		35.	People with HIV are a part of the community I am a part of, and if I can do something to help someone else in the community, in any way, I feel that I should do so.
MIPA in cure research	Involvement of key populations	Key Populations [Partner]	Cis man	52		36.	Well, I think it’s [involving partners in cure research] nice. I believe it’s beneficial. There is often a lot of focus on the patient themselves. But the patient is often broader, and the partner is a very significant person in the whole process.
Challenges to MIPA in cure research	Uncertain contributions	Person with HIV	Cis woman	48	Diagnosed with HIV in 1996, has a migration background	37.	What could I contribute? The only contribution I can make is to just participate in the research, I can’t think of anything else than participation or maybe assisting people who participate
Challenges to MIPA in cure research	Uncertain contributions	Key Populations [Non-Partner]	Cis man	25		38.	Yeah, I think that’s [cure research] more a role for a researcher […]. Of course, I almost say yes to anything, I’ll always think along but that’s also my nature. But if I’m looking at it critically, then I think, what can I add to this, what can I say that someone else can’t add?
Challenges to MIPA in cure research	Lack (research) of skills	Person with HIV	Cis man	36	Diagnosed with HIV in 2020	39.	I personally think that those who have no knowledge should not be included in the decision-making processes and the analyses of research data […] You must entrust that to the people who are trained for that. But it would be good to involve those who are interested in the results or conclusions that are drawn from that.
Challenges to MIPA in cure research	Lack of (research) skills	Key Populations [Partner]	Cis man	57	Has a migration background	40.	I respect that, that people want to be involved. […] But […] you must respect scientists and assume they have the best intentions. […] It should not be that they [people with HIV] should have influence on policy based on some kind of pseudo-expertise. It should be based on actual knowledge, concrete scientific evidence, because experience is nice and all, but it is not the same as things that can. be proven scientifically
Challenges to MIPA in cure research	Lack of (research) skills	Key Informant	Cis man	36		41.	When you examine a cell in a laboratory, you end up doing it simply to help a patient, but the patient will not be able to say much about that cell. We [researchers] really must have to figure that out ourselves. That’s what we studied for. But if you’re talking about social issues, seeing the urgent need - and that is cure - but also the social issues that are at play with HIV and things that we just think a lot less about, then you really need the input from people who also have it [HIV] and who just experience it [HIV].
Challenges to MIPA in cure research	Skepticism	Key Informant	Cis man	65		42.	Very often, it’s the case that patient involvement only really happens after the fact and then is kind of used as an excuse [to claim meaningful involvement]. And they [researchers] ask stuff [input] but then it turns out everything is already decided.
Challenges to MIPA in cure research	Skepticism	Key Informant	Cis man	50		43.	It [MIPA in cure research] varies. We sometimes notice that they [the Dutch HIV association] are involved because the subsidy provider demands that the patients’ interests be included in the research

Table 3. Key recommendations for MIPA in cure research.

Recommendation	Rationale
Increase awareness, guidance, and support for MIPA in cure research. This can, for example, be achieved by designing accessible information campaigns and developing skill training for both researchers and community members on how to effectively engage in MIPA practices.	Many people with HIV are not aware of how they can be meaningfully involved in cure research, indicating a need for more awareness and support.
Fund and incentivize collaborative approaches where decision-making power is equally shared between the community and researchers.	Ensuring decision-making power enhances the authenticity of the role of the community within research. It further promotes ethical decision-making and social justice in research and combats tokenism.
Integrate MIPA principles into standard research protocols and ensure MIPA is a core aspect of funding acquisition.	Adding MIPA as a requirement for funding acquisition transforms MIPA from being optional to a fundamental part of the research process.
Implement patient empowerment interventions to improve research self-efficacy among people with HIV.	Empowerment interventions can improve self-efficacy, health literacy, perceived control, and self-advocacy skills, all essential for effective meaningful involvement.
Implement community health and research literacy initiatives to improve the health and research literacy of the community	Enhancing literacies among the community fosters greater collaboration between communities and researchers, which ensures equal decision-making power, and makes the research process more inclusive.
Develop consolidated criteria for MIPA in cure research beyond clinical aspects.	Standard criteria for MIPA will clarify how communities can be involved in HIV cure research and combat tokenism, improve transparency, and offer guidance on best practices for involving people with HIV in HIV cure research.