How can patient advocates work together to reduce health inequalities?

Join us for a twitter chat tonight at 8pm (BST) co-hosted with National Voices using the hashtag #BMJDebate

Health inequalities are a serious issue across the UK, Europe, and the rest of the world. The rate of improvement in healthcare provision doesn’t match the rate of access and outcomes for people from a range of backgrounds. We need strong united patient advocacy to help solve this global challenge.

Across the spectrums of race, age, poverty, rurality, housing, or digital connectivity, in the UK, Europe and beyond, the statistics are stark. Additional factors such as being a refugee, being homeless, having been in care, or having served time in prison also deepen health inequalities.

The Marmot Review highlighted the social gradient in health. Housing, education, employment, and community all contribute to health outcomes, so tackling health inequalities needs cross-sector action. While leadership and system-change is required, the voluntary and community sector are well placed to deliver effective support that is tailored to local needs, through their relationships with local communities. This “reach” of the sector should be harnessed to deliver what Marmot calls “proportionate universalism,” so services and support are offered to all and targeted to those who can benefit the most.

It is clear that effective activism and campaigning is needed at a societal level. Although some organisations have taken up activist campaigns on more general issues affecting their members, such as the denial or restriction of welfare benefits, much of the current work of campaigning patient groups is often condition specific in its focus.

Umbrella bodies at national and international levels such as National Voices (England) unite many condition-focused charities of differing sizes around a shared mission of championing person-centred care. There is a continuing challenge to ensure that definitions of person centred care keep the question of health inequalities at their core.

In many areas of activism, the agendas are distinct, but with common themes of injustice and equality, so lending support across these themes can be powerful when it happens. This approach has become a key tenet for the sociological concept of “intersectionality”. Instead of focusing on specific issues of any given disadvantaged group, it involves understanding what the common elements are, and building coalitions around those points. A recent example might be unification of patient groups around the health implications of Brexit in the UK.

There are many organisations and groups set up to focus on specific conditions or patient characteristics. This creates a tension, as we accept that the impact of conditions, demographics, geography, and services are complexly interwoven with each other, yet our structures and organisations have a siloed focus. This tension is increasingly apparent as we now live in an era where “multimorbidity is the norm,” and thus where people’s care needs are no longer neatly organised into discreet conditions.

This tension can come to the fore in debates about health and care funding. Health and social care has a finite pot of money. It isn’t quite so precise a budget that if one patient gets X medication, then another patient can’t get Y medication, but there is a feeling of competition. We saw this play out in the media during the 2016 dispute over the funding of Pre-exposure Prophylaxis drugs to prevent HIV. This has been seen in the debate of value that is integral to emerging health technology assessment (HTA) work and NICE guidelines.

When these debates are played out in polarised media and won by whoever shouts the loudest (or has the most resources to apply) it may not benefit anyone in the end. As set out in the latest VCSE Review, while achieving accessible community-based support that enables people to live well in their own areas, VCSE organisations described “a constant battle between their missions set by their communities, and their need to chase funding priorities set elsewhere.”

There are some excellent examples of patient led groups and voluntary sector organisations rising above the risks of “divide and rule” tactics of a system. In the PreP row, HIV/AIDs charities united with cancer and other condition groups to resist the apparent attempts to play them off against each other. French viral hepatitis patient activists have made sure that participants from Eastern Europe can be included in clinical trials in France. Social pharmacies in Greece collect leftover or surplus medicine and donations to provide  treatment to underprivileged people in need.

Many of the confounding factors of health inequalities need regional, national, and international policy and infrastructure from governments, but the voluntary sector and patient-led groups also have a crucial role to play in this.

The topic of health inequalities will be discussed on Tuesday 10 July 2018 at 8pm (BST) in a #BMJDebate on Twitter.

Anya de Iongh is patient editor for the BMJ and works nationally and locally around person-centred workforce development and self-management support services.

Competing interests: Full details here.

Laura Bell, Communications and engagement officer, National Voices.

Competing interests: Janssen gave National Voices some funding in 2017 to do work on health inequalities, which paid for a workshop that National Voices hosted with members. 

Tamás Bereczky is a gay, HIV positive father living in Budapest, Hungary. A linguist and social psychologist by profession, Tamás currently works as the communications officer of EATG, the largest network of individuals living with HIV in Europe. His latest project is the “Other 364 Days When It’s Not World AIDS Day” video blog.

Competing interests: None declared.