The need for a “health systems voice” – examples from the HIV community

Today is World AIDS Day - an opportunity for people worldwide to unite in the HIV response

The need for a “health systems voice” – examples from the HIV community

By Ida Sperle, Coordinator, Centre for Health and Infectious Disease Research (CHIP), and Coordinator, Health Systems Global

Today is World AIDS Day – an opportunity for people worldwide to unite in the HIV response and support people living with HIV as well as remember the many lives lost.

For the last two years, the European HIV testing week has taken place in the week prior to World AIDS Day. Last week (22 November) it was launched for the second time. More than 700 organisations across Europe hosted activities to increase awareness about HIV testing and the benefits of early diagnosis, which has the aim of making more people aware of their HIV status. HIV testing and awareness activities took place on the streets, in clinics, at universities, in gay clubs and saunas, and other venues in 52 countries.

The week shined as an example of how the HIV community can be united in joint efforts to stall the pandemic. The HIV response is well known for its engagement of civil society and community-level activities. The voice of people living with HIV is loud and hence national governments and international organisations have heard them. HIV is a global priority area and continues to be one largely due to the activities carried out by civil society.

Including the community and recognising it as a key force is a crucial part of the global response to HIV. And it is one that others working in different public health fields can learn from and be inspired by. People living with HIV have become voices that cannot be ignored, but who represents the “health systems voice”?

The Third Global Symposium on Health Systems Research was a place for discussion and debate on crucial issues to improve health systems. But where was the input from the victims of poor health systems? The discussions among technical experts will not reach national governments and international organisations the same way as the people directly affected by the poor health systems can. Both are needed!

The theme of the Third Global Symposium was people-centred health systems. The patient, the person, needs to be in the centre. However, without the patient community involved in the discussions at the Symposium, an important aspect and contribution on how to make this a reality was missing.

As put by Albert Einstein, “Insanity: doing the same thing over and over again and expecting different results”. Perhaps it is time to further, and truly, involve patients and people who are suffering from weak health systems so that they can express their opinions, advocate for change and be active participants in their own health and well-being.

Building a community takes time. The HIV community has been active in advocating for an improved HIV response since the beginning of the pandemic. However, in order to further increase the role of health systems on the international agenda a health systems community that reaches beyond the walls surrounding the health systems experts is needed. Here is to hoping that such a community can be represented and heard at the Fourth Global Symposium in Vancouver, Canada, in November 2016.

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