USER DRIVEN CARE AT AIDS 2014.

23 July 2014 (11:00-12:00)

Brief summary:
The title of the meetings was: An informal discussion on user driven HIV care.
It began with a brief welcome by Sigrun Mgedal, who outlined the basic ideas behind the meeting
and underlined that the meeting was an invitation to mutual exchange of thoughts and ideas on how to
develop the user driven involvement and governance. She also remarked that there is no one-way to do
this and that we already have a lot of evidence-based knowledge that must be included in the process
of mutual learning as we move ahead.
The presentations highlighted three different approaches to user empowerment in the user*-provider
interface:
User driven clinic
User influence through community system mobilization, through peer-to-peer support, and in
challenging and supplementing existing health care options
User influence and governance facilitated through a mediator agreement
* We use the term user (of health care services) there does not seem to be
any term (or name) that all can agree fits the purpose. , Client and patient have
also been suggested. We dont think it is fruitful to use a lot of time and
energy on this debate at the present moment, we just wanted to mention that
we all are aware that we have to find a good solution.
These three examples intertwine and compliment each other, differences are more influenced by
context, resources and individual approach. Therefore we can all learn from each other, and elements
from these and other examples can meaningfully be shared, both nationally and internationally.
Interesting to notice that many of these approaches have fundamentals based on early initiative in
Global South
We started with learning about; User Driven Clinic A new direction in HIV care in Norway, an
initiative taken by The Head of the Medical Clinic, Ole Rysstad, Soerlandet Hospital Kristiansand
(SSHF), presentet by Are Gamst from the Users Board SSHF and Kim Fangen from Nye Pluss the
Norwegian Organization for PLWH.
This is a new and rather radical way to give the users direct influence and control. This concept is still
under development, and we think that with individual adjustments it may be used most clinics and it
can also be applied to other user groups. The essential idea is that the user should get direct control
and governance over the care (holistic treatment). (See attachment)
Empowerment in the East, Svetlana Moroz, UNAIDS Commissioner and the Head of the Board of
Club Stivanok, All-Ukraine Network of People Living with HIV, Ukraine, informed us about the
work that they are conducting in Ukraine. She spoke about the project: When women move forward,
the world moves with them (in the framework of the UNODC initiative Women for Women) The
project is aimed at improving mental, physical, and social well-being of highly vulnerable women and
girls in Donetsk oblast of Ukraine. (See attachment.)
Why user interaction is essential - Tristan Barber, MD, Homerton University Hospital NHS
Foundation Trust and British HIV Association (BHIVA), UK Tristan gave us examples from his work

at Mortimer Market Centre, which rooted on the idea of having an holistic approach. Tristan pointed
out how user involvement helps at individual level as well as at service provision/political level and
even at national/international political level and can supplement and enhance patient care. (See
attachment.)
Patient involvement and peer support in HIV, Dr Rachel Baggaley, World Health Organization, WHO
HIV Department together with Martin Christopher Donoghoe, WHO Europe, gave us their thoughts
on the importance of a greater user involvement, especially in reaching key populations, and they
confirmed that this was something that WHO held high on their agenda and that they were eager to
play an active role in facilitating and influencing this initiative.
The meeting ended with a brief sharing of ideas and immediate thoughts around the theme.
Here we will try to summarize the main line from the presentations and discussion:
1. User involvement, governance, and peer support is critical for HIV treatment and care.
2. User driven care is of relevance to all living with HIV and AIDS, and all health care systems
with treatment and care for this population, and a valuable addition and support the prevention
work on a broad scale.
3. This approach will enhance the synergetic effect between healthcare providers, patients,
community and research.
4. This is a cost efficient approach that can easily be customized any region and country, and can
easily be assessed
5. This is a hand on approach, there are various examples from many places around the world
were user involvement, user governance, and peer support is proving to be very successful.
6. This is pioneer work and needs to be explored and investigated at all levels, in combination
with robust research agenda.
In the aftermath of the meeting there are various ways to move forward, at different levels and with
different sets of stakeholders.
1.
2.
3.
4.

At Geographical levels (local/nationa/regional/global)

At institutional level (such as UNAIDS and WHO)
At professional level.
At Users/client level.

How this can best be done should be a topic for early follow up dialogue
Attachments:
1)
2)
3)
4)
5)
6)

Program and list of participants

User Driven Clinic A new direction in HIV care in Norway
Empowerment in the East
Why user interaction is essential
Form for Identification of Themes for PCB meetings UNAIDS
USER_DRIVEN_CARE_summary310714