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Printable Handouts
Navigable Slide Index
- Introduction
- Disclosures
- A success story
- ACT UP & TAG
- Its members went everywhere…
- They achieved dramatic change
- Developing more effective drugs
- Mark Harrington, 1996
- HIV treatment is a home-run for drug therapy
- Waves of patient activism, since 1990
- Engagement requirements
- Working with patients in a professional setting
- Agenda (1)
- Arnstein’s ladder of participation
- Role in community-based research
- Is the standard realistic for all biomedical sciences?
- An idealized chain of translational research…
- Translational roadblocks (1)
- Translational roadblocks (2)
- 2000–2010: is research doing its job?
- Translational roadblocks (3)
- Solutions have focused on teamwork
- Agenda (2)
- Sorting approaches to engagement
- Currently practiced in the U.S.
- Agenda (3)
- Broadly engaged team science (1)
- Broadly engaged team science (2)
- How it started & how it’s going
- Traditions and practices
- Agenda (4)
- What is meaningful engagement? (1)
- What is a relevant stakeholder?
- A taxonomy of health care stakeholders
- What is meaningful engagement? (2)
- An old school
- Challenging the ‘old school’’
- A new school
- What is meaningful engagement? (3)
- Alternatives to the gold standard?
- What is the right level of involvement?
- What is meaningful engagement? (4)
- What is the right level of engagement?
- A fit-for purpose engagement “map” (1)
- A fit-for purpose engagement “map” (2)
- Thank you!
Topics Covered
- Health care activism
- Patient-centered research
- ACT UP (AIDS Coalition to Unleash Power)
- TAG (Treatment Action Group)
- HIV/AIDS treatment activism
- Community-based research
- Translational research and associated roadblocks
- Broadly engaged team science
- Science and society
- Meaningful engagement
Talk Citation
Concannon, T. (2023, January 31). Health care activism, community health, and patient-centered research [Video file]. In The Biomedical & Life Sciences Collection, Henry Stewart Talks. Retrieved December 26, 2024, from https://doi.org/10.69645/FPDG6689.Export Citation (RIS)
Publication History
Financial Disclosures
- Dr. Concannon has worked with the Institute for Value Improvement, the PhRMA Foundation, the Patient-Centred Outcomes Research Institute and the NIH/NCATS.
A selection of talks on Pharmaceutical Sciences
Transcript
Please wait while the transcript is being prepared...
0:00
Hello, my name is
Thomas Concannon.
I'm a Senior Policy Researcher
at the RAND Corporation and
I am an Assistant
Professor of Medicine
at Tufts University
School of Medicine.
My talk titled Healthcare Activism, Community Health, and
Patient-Centered Research could alternatively be titled:
how to make all biomedical
research more outward-facing.
0:24
I have a few disclosures of
research funding that is related
to the content of this talk.
All of these are non-profit
or public funders
and one of them is
linked to industry.
One line here, the
PhRMA Foundation
and PhRMA are
linked to industry.
0:44
This is Peter Staley
arrested in 1989
along with two colleagues from
an organization called ACT UP
at Burroughs Wellcome
after protesting
the release price of a
new drug for treating
HIV and HIV infection
called AZT.
The new drug was released by
Burroughs Wellcome
at $10,000 a year.
At that time, that was an
unheard-of price for drug
treatment in particular
for one that was
potentially lifesaving
and may seem quite a
moderate price today.
His comment after the
demonstration was
that they buckled referring
to Burroughs Wellcome,
and lowered the
price by 20 percent.
From then on, the industry said
it's probably smarter to try
to talk to activists and
placate them as much as we can.
Then six months later, FDA reduced
the standard dose of AZT by half,
effectively making the
drug somewhat more
affordable to people
living with HIV.
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