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).
CHETRE’s future plans for their Locational Disadvantage Program, Siggi Zapart told the forum, include first aid training for residents and workers, developing a Local Drug Action Team action plan, a forum on gambling related harm, several new workshops, and a “scaled out and restructured” WiLDC course.
They are also looking at new partnerships to enhance community connectivity through art, green space and neighbourhood participation, a sport-based men’s health project, family mentoring and group-based support for newly arrived migrants and refugees, and creating a skilled and sustainable network of community health champions.
Zapart said three things underpinned the work of improving health literacy in locationally disadvantaged communities: raising awareness of the social determinants of health; capacity building; and enabling, supporting and encouraging community action.
She said the work could be replicated in other communities: “These actions lead to empowered community members who are motivated to take control of their lives and to take actions that will improve their wellbeing.”
From the standards to the coalface
Reflecting on the day’s discussions, Nicola Dunbar, Director of Strategy and Development at the Australian Commission on Safety and Quality in Health Care, said the Commission had been working on strategies to improve health literacy since about 2012, when they noticed the topic was being raised “organically” as a determinant of safe and high quality care.
The focus had been on individual health system users, but the Commission began to think about what could be done from a health system/health services perspective.
“What changed it for us was work that came out of the Institute of Medicine on health literate organisations… We asked ourselves, How can we help health services to make it easier for people – to reduce the information load?”
The Commission went on integrate some things we know are effective on the “supply side” of health literacy – such as communication, partnerships and way-finding – into the safety and quality standards.
“If it’s in the standards, they will pay attention and changes will happen. It’s about identifying those levers, so that they’ll become part of daily practice,” said Dunbar.
“Today has highlighted the varying angles we need to take.”
Lou-Anne Blunden, Director of Clinical Services Integration Sydney Local Health District, said the forum discussions had been a reminder that health literacy has impacts “across the board” – from facilities, to community, to staff, to research and more.
She said her LHD had been working with place-based-initiatives in areas such as Redfern, Waterloo and Lakemba, across agencies – government, NGOs and the community. She said:
Community is telling us what their needs are. It’s not up to us coming with our solutions; we are learning from them.
It becomes more sustainable once the community starts to take the lead.”
Amy Prince, Director of Planning and Performance at South West Sydney Primary Health Network, said that observing the vast array of work in this area, it’s clear that addressing health literacy is a puzzle.
The GP alone can’t address health literacy but they can sometimes underestimate the power that they have to “just shift the needle a little bit”.
Said Prince: “If every player in the health system takes a strengths-based approach to identify the small changes we can make to improve health literacy, we could really make a difference.”
See the interview with Amy Prince
Regina Osten, Program manager for primary and chronic care at the NSW Agency for Clinical Innovation (ACI), picked up on the “strong sense of momentum” from all those involved in health, to improve health literacy.
She agreed that incorporating health literacy into the national safety and quality standards had directed attention to the area “in a way that nothing else we do in the system does”.
She said the standards were a far more powerful lever than policies in directing accreditation and action within the health districts and elsewhere.
The ACI has been in the process of developing a web resource in consumer enablement, which picks up on health literacy as well as a number of other things related to self management.
When the guide was put out for consultation, Osten said the ACI received “enormously engaged and positive feedback”.
“We might finally get some traction on real person-centred care,” she said.
Professor Don Nutbeam (profiled in this previous report from the forum), reiterated that there is a huge cost to not getting communication at every level of health right. Diverting the money wasted every time we get it wrong will save money and improve health.
There were some other great take-homes for the day, one originating from Denmark, conveyed by the CPHCE’s Professor Evelyne de Leeuw, who reflected on the Danish saying ting tager tid (things take time – the three Ts). It was true, she said, in respect to everything we do:
It takes time to read; to sit down with people and share information; to organise things; for ideas to percolate. Maybe we just need to take the time get things right.”
This was an idea that seemed to resonate for many in the audience.
Exhaustion with constant change was seen as a problem. For local health districts, said Lou-Anne Blunden, there was the constant challenge of developing partnerships with government and other agencies, then a loss of momentum when the other agencies restructure with new leadership and priorities.
She said it helps to have leaders who realise it is a long game with vulnerable populations and that intergenerational impact is required. We need long term plans that don’t change when the leaders change.
Some of the biggest barriers to acting on health literacy were seen as clearly identifying specific problems within a system to be solved, specific actions to take, and robust ways of measuring outcomes.
On the topic of how we identify targets and measure change, Professor Don Nutbeam was sanguine. He told the forum to be on the lookout for practical responses to common problems, and not to get too hung up on definitions.
He advised: “Try to identify a couple of points within the system or in your local area, where we think improved communication can really make a difference to patient quality and safety, and can make an observable change, and make it happen.”
And an interesting, final comment from the floor was that, on one level, this comes down to trust – not just the trust that patients and community members place in those who are helping them to improve their health, but trust in ourselves.
The forum participant said: “We’ve known for a long time that better informed people make better decisions, but somewhere along the line we lost trust that better communication would improve outcomes for our patients. We need to rebuild that trust.”
In the final analysis, Professor Mark Harris reminded us as he closed the day, health and health care is mostly about information – and that accessing, understanding and using that information is becoming more complex.
Individuals, health services and researchers need to work towards improving all aspects of health literacy, while realising it is a long game.
The forum concluded with the CHPCE’s annual awards, which were in three categories: partnership awards, career achievement awards and general practice research awards.
Some of the recipients are pictured in the tweets below, and Croakey spoke to one of the GP research award recipients, Dr Olataga-Alofivae Doorbina, whose enthusiasm for conducting research as a way to improve clinical practice and patient outcomes is an inspiration.
Watch the interview with Olataga-Alofivae Doorbina
More tweet reports
Warm thanks to all those who helped to share the #CPHCE news. Twitter analytics for the period of Croakey’s coverage of the forum (16 September-2 October) show there were more than 2.6 million Twitter impressions, with 62 participants using the hashtag. The Twitter transcript can be read here.
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