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Making health literacy everyone’s business – #CPHCE forum profiles innovation and empowerment in communities

Ruth Armstrong writes:

Health literacy has been seen as a two-way street, comprising an individual’s skills and resources on one side, and the complexity and navigability of the information and systems they are trying to traverse on the other.

But looking closely, it’s really or more like a complex intersection of all the things that feed into these categories on both sides – the social determinants of health, community and other resources, language, culture, system reflexivity, communication skills, cultural safety and more.

So where and when to we intervene to improve people’s understanding about health, their ability to navigate health systems and their empowerment to live healthy lives they value?

The answer is at every point of contact, and all the time. With respect, humility, curiosity, creativity, passion, trust and, very often, patience.

This was the big take-away from the recent annual forum of the Centre for Primary Health Care and Equity (CPHCE) at the University of NSW, where participants heard about diverse, on-the-ground projects empowering communities in south western Sydney.

Health literacy is core to the CHPCE’s work. The Centre works closely with its research partners, on projects to improve health literacy in primary care, in health organisations systems and services, and in communities with high needs.

Three short presentations from the three collaborative research hubs of the CPHCE looked at the Centre’s health literacy research projects, providing fodder for the forum’s discussions.

Tools for prevention in primary care

Professor Mark Harris, Executive Director of the CPHCE, said low health literacy is common in primary health care and is associated with increased risk.

Although there are very good measures of health literacy (such as Australia’s Ophelia), finding an accurate screen to use in practice has proved challenging.

The question “How confident are you filling out medical forms by yourself?”, originally devised by Dr Lisa Chew and colleagues, is probably the best discriminator currently available for use in practice.

The CPHCE has been collaborating on trials using practice nurses trained to support health literacy using the “5As” (Ask, Advise, Assess, Assist, and Arrange).

These include advice using communication techniques such as Teachback, goal setting, referral to telephone coaching or face to face group program and follow up, as part of the Better Management of Weight in General Practice study, with promising improvements in health literacy at 6-month follow-up.

Harris also mentioned the IMPACT study in south west Sydney, which involves practice nurses using the above techniques, as well as supporting access to online health information for patients with Type 2 diabetes, in both Arabic and English. Qualitative feedback collected so far indicates variable ease of use and understanding of the website and educational material.

Building on the work with practice nurses and hot off the press is the Centre’s current collaboration to produce and trial the addition of a purpose-built patient-facing app, my snapp. This is for chronic disease prevention in general practice patients with low health literacy, and is in being tested at the moment.

The app focuses on goal setting and self-monitoring, and referral to the telephone coaching line, get healthy.

Harris said efforts to improve health literacy in primary care were an “ongoing journey” but there were some lessons learned along the way. He said:

We need to focus on reducing the information demands on patients, as well as supporting improvements in their health literacy.

Routine general practice care is usually insufficient to support significant change in health risks. It can be supplemented by information technology as long as it is tailored to patients’ health literacy and language skills, and the tailored information is actively supported by GPs and practice nurses.”

Health literacy, culture and language

Associate Professor Jane Lloyd Director, director of the Health Equity Research and Development Unit (HERDU), raised some challenging issues for health professionals and organisations.

She reminded us that people are not “empty vessels” just waiting for information to be dropped in.

“We’re all part of communities which, by their very nature, are dynamic and changing, resilient and able,” she said. “So I believe action in and with the community provides a really powerful mechanism for improving health literacy.”

Starting her presentation with this slide on the actions required to improve health literacy at various levels, she asked where should we intervene or, more importantly, where do we intervene first?

Lloyd said that, when she went looking, she discovered a wealth of information and research about improving patient health literacy, but very little about organisational health literacy.

She described health literate organisations as those that reduce the health literacy demands placed on patients and said that, if we want to align these demands better with the public’s skills and abilities, it will require system-level changes.

Lloyd talked about the related (but not to be conflated) concepts of culturally competent communication (understanding that individuals’ concept of health may differ, affecting the way they receive, process and accept information) and linguistic competence (making sure patients who don’t speak English are offered bilingual clinicians or interpreters).

But she also stressed the need for a third quality – cultural humility – which she said is required both on an individual and an organisational level.

Cultural humility turns the lens around, so that health care providers commit to continuously evaluating and critiquing themselves, to redressing the power imbalances between practitioners and their patients, and to forming non-paternalistic and truly mutual partnerships with individuals, communities and populations.

Lloyd said “there’s a lot of culture going on” when we’re at work – including our personal culture, values and beliefs, our different cultures as health professionals and organisational cultures, both aspirational and lived.

She outlined some pathways to professional and organisational responsiveness through health literacy, cultural humility and language resources, and encouraged us to “check our biases”.

Making health organisations more literate

Lloyd described a pilot study, which looked at how Sydney’s Canterbury Hospital was performing in terms of its response to the health literacy, cultural humility and language requirements of its patients.

Employing bilingual educators to tour the hospital with people from the Rohingyan, Bengali and Arabic language groups while conducting “walking interviews”, they found that the in-hospital systems were mostly viewed positively. People felt welcomed.

A surprise finding, however, was that patients found it more difficult to get to the hospital than to navigate their way around the campus. They realised that hospital tours actually needed to start at a known point (in this case the library) so that the patient and educator could travel to the hospital on public transport together.

The Rohingya Little Local

Lloyd presented an example of a population-based intervention, occurring through Can Get Health in Canterbury (CGHIC). This partnership, between Sydney Local Health District, Central and Eastern Sydney PHN and the CPHCE, aims to improve health and reduce inequities for marginalised culturally and linguistically diverse populations in the area.

One of CGHIC’s projects is within the Rohingyan community, about 800 of whose members live in Canterbury. It is based on the concept of The Big Local in the UK, where a lottery-funded initiative saw resident-led collectives in 150 areas receive a million pounds each over 10 years, to decide on and fund initiatives to improve health.

Funding for CGHIC’s “Rohingya Little Local” is more modest – a one-off allocation of $10,000 – and comes on the back of several years of conversations and activities with the Rohingyan community.

The team has handed the decision-making about how to spend the money to the community. As they develop their own priorities, it is hoped the community members will hone their skills in negotiation, decision-making, and actions to improve health.

It hasn’t always been comfortable or easy, said Lloyd. The team has had questions about issues such as how to define the community, who to include, the role of women and how much support to provide.

“We will see where it takes us,” she said.

Watch the interview with Jane Lloyd

Building community health literacy

The Centre for Health Equity Training, Research and Evaluation (CHETRE) has, as one of its three “streams”, a Locational Disadvantage Program, which involves engaging with residents and groups in communities in South Western Sydney that suffer health and other disadvantages.

Dr Siggi Zapart, a senior research and evaluation Officer for CHETRE’s locational disadvantage stream, and Andrew Reid, a community development research officer, presented an impressive tag-team round-up of some of the stream’s activities.

Reid said Community STaR (Service for training and research) focuses on increased community engagement, participation and empowerment, through education and training to support the development of community events and programs that reflect issues of community concern and interest.

Some Community StaR programs and activities include:

  • Learning circles (focused discussions in which residents talk about issues and how to address them).
  • The provision of training to provide skill development and job experience
  • Community forums, and seminar and speaker program, based around local and locally identified, wider, issues, with Australian and international speakers
  • Working with partners to identify perspectives, needs and issues, and to support community-led programs and campaigns.

In the past few years, in partnership with other organisations, Community STaR has run forums on a range of issues including preventing alcohol-related harm (with a focus on local issues and a follow-up forum to monitor progress), men’s health (looking at overcoming barriers to engagement), family drug support services and how to access them (for frontline workers), dual diagnosis (for frontline workers), climate change, social inclusion, food (looking at food advertising and food security), community gardens, and environmental issues.

In 2016, CHETRE partnered with Liverpool Council and others to produce a film “Residents verdict: not Dodge City,” in which residents shared their feelings, experiences, ideas and aims for the future.

Reid also described CHETRE’s Working in Locationally Disadvantaged Communities (WiLDC) course, which supports workers in health and non health organisations to learn about the causes and consequences of locational disadvantage, and conduct community projects aimed at improving health.

Participants attend workshops, undergo site visits and excursions to other established community programs, and receive help desk support.

Participants have gone on to run community programs aimed at cultural and age appropriate healthy lifestyle initiatives, chronic disease management, vaccination, and men’s and women’s health, in areas of Sydney such as Fairfield, Bankstown and Liverpool (see slide).