An innovative Victorian project that aims to improve health literacy is attracting international attention (for an overview of why health literacy matters, read this previous Croakey post).
The project – OPtimising HEalth LIterAcy, or Ophelia – involves a questionnaire that measures a patient’s ability to engage in and understand health care. Its development was guided by input from people who have significant difficulties caring for their health and from experienced practitioners.
The Ophelia project will be profiled at an International Health Literacy Network conference at the University of Sydney tomorrow, which will be covered by journalist Marge Overs for the Croakey Conference Reporting Service. Marge has organised the articles below in which:
• Professor Richard Osborne, Chair of Public Health and Social Development at Deakin University, explains that the vision for Ophelia is to develop a menu of health literacy interventions that are tailorable, implementable and promote better health outcomes and health equality.
• Professor Rachelle Buchbinder, a rheumatologist and a lead investigator on the project from Monash University, describes how Ophelia moves health literacy beyond a focus on literacy and numeracy.
Health literacy project learns from patients
Richard Osborne writes:
Ophelia is different. I have been involved in a very wide range of research projects for over 20 years, some duds, but many have had lasting local and global impacts. It has been an honour to have the opportunity to work with so many brilliant researchers from across the globe.
If I chose to dream up the most exciting project in the world, one which could change the world we live in for some of the most disadvantaged and disempowered peoples in all our communities, it would be Ophelia.
This is a big statement. Let’s look at what we are doing.
First, the name, OPtimising HEalth LIterAcy – Ophelia, a name that comes from the Greek word ‘help’ – a most fitting name. Ophelia, such a beautiful and feminine name, seeks to engage in deep listening to the hearts and minds of people in our community.
The business of Ophelia is to give voice to all participants, from the meek and poorly citizen in their crumbling home, to the well-educated and wealthy executive and, equally, the frontline practitioners and decision makers.
All parties get to speak their minds about their troubles and strengths in understanding, getting and using healthcare and health information. This is the starting point – the full range of issues that are out there – and these are put on the table.
All of these ideas are carefully considered in developing interventions to improve health literacy. The academic name for this is a Needs Assessment.
Why is this important? Well, if you were commissioned to create a new car, and you weren’t informed about how many people it was to carry, over what terrain, what distance, nor the particular local engineering requirements, you might develop something useful, but that’s very unlikely.
Sadly, many interventions developed in the health setting do not do this kind of situational assessment nor a needs assessment. Research is done, then the researchers seek places to apply it – akin to crafting a square peg for a round hole.
Much intervention development research is not fit for purpose and feasibility and relevance to people in the real world is often not considered. In the field of health literacy, most research has been done in North America, in a very different healthcare system, where the principle focus has been on reading ability and numeracy.
Ophelia, with the wisdom of academic fields outside health, warmly embraces all the actors, and their intimate knowledge of what works, for whom, under what circumstances, and why. This is “co-creation” – an approach that is becoming increasingly important in the health sector.
The needs assessment process in Ophelia uses a questionnaire that we developed specifically for this purpose – the Health Literacy Questionnaire (HLQ).
Health literacy is a complex concept with many aspects. We developed the HLQ using the perspective (voice) of people experiencing significant difficulties caring for their health, as well as the most experienced practitioners.
These people indicated that health literacy involves nine separate aspects (see http://www.biomedcentral.com/1471-2458/13/658).
Harvesting pearls of wisdom
As part of the Ophelia process, detailed information is collected from the community members we seek to empower using the HLQ. This information is then presented to the best frontline practitioners and managers to consider.
It is the tacit knowledge, or local wisdom, of these practitioners we seek to help us develop the health literacy interventions. These are practitioners with many years of experience of deeply engaging with their community where they have seen many individuals borne, fall ill, recover, recover again, and die.
These front-line practitioners I like to call ‘Sage Practitioners’. Everyone has met a practitioner (not necessarily in health) who somehow makes us feel so very comfortable, listened to, safe, and gets to the nub of our problem and nails our issue.
These are the people who generate that ‘light bulb’ moment and empower an individual to take action in their health. Ophelia really values these people.
Ophelia systematically extracts the pearls of wisdom from the Sages and the pearls are inserted into a mosaic that identifies potential intervention points at the patient, practitioner, organisational, and the inter-organisational/policy levels.
These interventions are generated within the participating health services and reflect what the very best practitioners do on a daily basis. Ophelia seeks to gather these and make them usual practice of all practitioners and organisations. Because they are locally developed we already know they are implementable– no round holes here!
In the Ophelia Victoria project, we have eight different organisations across city and rural areas.
They all get to see what each other are doing – this is powerful – a superb community of practice is emerging (by design). They are co-creating, owning and refining their interventions. The health literacy interventions are all cross-checked against the available scientific literature.
The vision of Ophelia is to develop a menu of health literacy interventions that are tailorable, implementable and promote better health outcomes and health equality. It’s ambitious and tracking well.
We have interest in the method from all five continents and even the WHO see this as a potential process to impact on local health systems in low and middle income countries.
The Ophelia Victoria project is funded through an Australian Research Council (ARC) Linkage grant, the Victorian Department of Health, Deakin University and Monash University.
Much of the process of Ophelia was designed by Roy Batterham at Deakin University and the Chief Investigators are Richard Osborne (Deakin), Rachelle Buchbinder (Monash) and Alison Beauchamp (Deakin).
Developing practical solutions for patients
Rachelle Buchbinder writes:
Before Ophelia, existing measures of health literacy didn’t capture concepts of health literacy in enough detail to help us work out how we can help people with sub-optimal literacy.
The old health literacy tools were really a literacy tools or numeracy tools. Health literacy is not just reading and writing – there are many other factors that affect a person’s ability to engage in healthcare.
I have a patient who is illiterate but I didn’t know for about 10 years. He never missed an appointment, he never missed his blood tests, he understood how to take his tablets. He was able to do this because he has a very good GP and he has good support structure. He’s health literate but he’s actually illiterate.
We developed the Health Literacy Questionnaire (HLQ) from the ground up by asking patients what skills they think they need to be able to find, access, understand and use health information to make better informed decisions about their health.
The questionnaire has nine domains, which measure a patient’s ability to engage in and understand health care. For example, it asks if they have a GP they can trust, or how difficult do they find reading health information.
From these answers, we can develop a profile of each patient and can identify strategies that might be able to help them.
The questionnaire can be self administered or administered through an interview. The GP or another healthcare provider can look at it and very quickly and identify where there might be problems and where they might individually be able to help the patient.
For example, we’re now rolling out the HLQ in the private hospital where I work. We’re hoping we’ll find sets of common profiles where the hospital might be able to do something about a particular issue that many patients share, so we can use it to improve the patient experience in hospital.
We could also use it as a tool to educate patients while they’re in hospital so that they go out of hospital understanding more about what they need to do to manage their health.
• You can track Croakey’s coverage of the conference here.