PHACS takes creative approaches to creating spaces for cross-disciplinary collaboration.
PHACS supports two national Community Advisory Boards (CABs), one for adults and one for young adult study participants. All of our health education resources are driven and created by study participants, caregivers, and PHACS study staff across the US. We focus on issues that our communities identify as important and on the solutions they identify as relevant.
Some of the key issues that PHACS addresses include HIV disclosure, HIV stigma reduction, peer support, healthy transition to adulthood, medication adherence, new media and patient outreach, and learning the results of PHACS studies.
Community Engagement in Research
Meaningful community engagement in HIV research supports the equitable collaborations between researchers, study participants, and the community. It brings together the theoretical and methodological expertise of academics and researchers, with the expertise of participants’ lived experiences and cultural- and context-rich perspectives, an orientation that has gained increasing credibility in addressing complex health and social problems. The 1983 Denver Principles written by individuals living with HIV affirm the rights of people living with HIV “to be involved at every level of decision-making” and “to be included in all…forums with equal credibility as other participants.” Numerous joint resolutions since then have underscored the importance of the Greater Involvement of People Living with HIV (GIPA) Principle, including the 2001 United Nations-endorsed Declaration of Commitment on HIV/AIDS and the 2006 internationally endorsed Political Declaration on HIV/AIDS. Citing the GIPA Principle, the Joint United Nations Programme on HIV/AIDS calls on organizations to allocate funding towards supporting the meaningful inclusion of people living with HIV in designing ethical research agendas, developing funding priorities, and creating opportunities for community leadership and advocacy, particularly for women, young people, and marginalized individuals.
When community members are directly engaged in the research process, it can lead to:
- Enhanced human subject protections to the community
- Increased legitimacy of research aims and conclusions due to the inclusion of more pragmatic study aims and of contextual factors surrounding real-world problems
- Findings that are culturally relevant and more easily translated into actionable recommendations
- Co-creation with community members of a platform that includes and values voices that have historically been marginalized or erased
- A foundation that allows issues and concerns important to the community to be expressed and addressed
These benefits can ultimately result in more protections and benefits to community members - and they support more rigorous methodology and validation of research findings.
Given the complex medical and social issues affecting families with HIV, and the desire to answer scientific questions that are important to improving the quality of life of those living with and affected by HIV, the Pediatric HIV/AIDS Cohort Study (PHACS) is committed to increasing and improving strategies incorporating study participants as expert collaborators in all phases of the research process and health education projects.