INTEGRATION OF CARE COMMITTEE
Danielle Beiling & Donald Powell, IOC Co-Chairs
Wednesday, January 20th, 2021, 10a-11:45a
Attendance: Danielle Beiling (co-chair) Janet Goldberg, Leo Ruiz, John Schoepp, Deborah Green, Bill Gross, Mitchell Caponi, Stephanie Serafino, Paul Carr, Ronnie Fortunato, Billy Fields, Brenda Starks-Ross, Greg Bruckno, Michael Ealy, Dorothy Farley, Matthew Lesieur, Rose Chestnut
Staff/PHS: Jose Colon Berdecia, David Klotz, Guadalupe Dominguez Plummer, Graham Harriman (Governmental Chair), Bettina Carroll, Kimbirly Mack, Ashley Azor, Cristina Rodriguez-Hart, Bettina Carrol, Rachel Crowley, Jose Colon-Berdecia, Claire Simon,
Agenda Item #1: Welcome/Introductions/Moment of Silence
Agenda Item #2: The Consumer-Led QI Project: Integrating the Lived Experiences of People Living with HIV into Recommendations for HIV Care Quality Improvement
Dr. Cristina Rodriguez-Hart presented on the community based participatory research (CBPR) that she conducted in partnership with the Consumer Committee of the Council.
Dr.Rodriguez-Hart explained the theoretical framework of CBPR and how it is based on Paulo Freire’s theories – true knowledge and expertise reside within the people, and that true teaching is a cooperative process wherein both parties learn and grow. The presentation also included information on different types of CBPR and considerations.
Quantitative methods are counts – while qualitative is about texts and words, in which you look for patterns or themes.
Goal of project was to evaluate how to establish positive consumer provider relationships from the perspectives of people with HIV
Domains identified were:
Caring relationships with providers that listen.
Consumers need continuity in relationships with providers.
To be partners in their care
Mental health and substance use challenge adherence -MH needs to be expanded
Education on advocacy and support groups
Co-morbidities are common and require continuity in care
Empowering consumers improves the planning process.
The report on the research lays out the process & findings in detail.
Process lent itself to engaging consumers, empowering consumers and strengthening people’s voices. The deep stigma felt from mistreatment when trying to access care was very powerful for consumers. Mr. Martin explained a dr who facilitated a personal medication holiday; the difficulty in bridging the gender gap between provider; lack of provider trust in client testimony; appointment cancellations without consideration for client’s schedule or time; providers make clients wait, but patients lose appointments if late; lack of adherence of providers to updated contact info; lack of explanation about consent forms.
Ms. Best explained how time and time again, clients are meant to feel like experiments. Mr. Martin noted that clients are masters on their conditions – need for a partnership in care.
Need to do a similar project with young people.
Want to feel welcomed when entering a clinic/service space – don’t want to feel like a number. That first impression is so important – and to make clients feel their time is valued. The number of people who are in need of services in the system is rising.
The way staff speak to patients – the assumptions staff make can be insulting or disrespectful. Doesn’t feel good to know that such people have access to our private medical information.
Basically keep saying treat us like a human being. And to ensure this must prevent staff burn out.
Agenda Item #3: Public Comment
No public comment.