This is the final report from an International Health Literacy Network conference held recently at the University of Sydney.
- Gaps in services for cancer patients from culturally and linguistically diverse backgrounds.
- A consumer health advocate’s call for more responsive health services.
- Feedback from conference participants, including advice for health professionals to “stop telling and start asking”.
Call to help immigrant patients negotiate the health care maze
Marge Overs writes:
A centralised telephone support service could help cancer patients from culturally and linguistically diverse backgrounds navigate the health system, Professor Phyllis Butow told the conference.
Professor Butow, Director of the Medical Psychology Research Unit at the University of Sydney, has been researching the experiences and unmet communication needs of immigrants for six years.
She said her unit is investigating a CALD connect telephone delivery service, where someone with medical and cultural knowledge and language skills can call patients around five times during their illness trajectory.
They could help them navigate the health system, lead them to written information in their own language, and refer them to health services.
Professor Butow said the health system needed to improve communication with people from immigrant backgrounds, who had unmet needs for written and verbal information.
She has conducted a variety of studies with cancer patients and survivors who speak Greek, Arabic or Chinese as their first language.
One quarter of survivors reported difficulty communicating with their doctor. They said they lacked written information in their own language; information about cancer and treatment; access to a specialist who speaks my language and needed help to ask questions.
Only 21% of immigrants reported ever receiving information about cancer in their own language.
“Not understanding the health system and needing an interpreter were top issues,” Professor Butow said.
In another study, Professor Butow’s team audiotaped analysed consultations with patients newly diagnosed with cancer that had spread.
They found that interpreter issues were a concern, with a substantial minority of interpretations (40%) being inaccurate.
“This was more the case with interpreters who were family and friends than professionals,” she said. “About one-third of those misinterpretations were judged to have a negative effect.”
Professor Butow said prognosis was the poorest area of interpretation, with 50% of what the doctor said and 59% of what the patient said not interpreted at all or not interpreted correctly.
Like the chicken talking to the duck…different voices
Professor Butow conducted focus groups with cancer survivors from first-generation immigrants. Here is a sample of their comments:
“You have no way of communicating – you can’t hear and you can’t speak, it’s very frightening.” Mandarin patient
“They gave me some books where I did the chemotherapy, but I couldn’t read them, they were in English.” Greek patient
“The nurse … spoke English; they gave me a lot of information… I didn’t listen.” Mandarin patient
“He speaks, but what we hear is only 20%, understand 20%.”
“I just sit there and say yes, yes, but I left his consultation and I didn’t understand most things.” Arabic patient
“You know it is like the chicken talking to the duck. It’s different voices.” Cantonese patient
Listen to our stories
Marge Overs writes:
Consumer health advocate Darlene Cox once heard a woman say the first month of her cancer diagnosis was as difficult and confusing as trying to do a crossword on a roller coaster.
“The system is failing if that’s how people feel, “ Ms Cox, from the Health Care Consumers Association, told the health literacy conference.
Ms Cox said she had been involved in consumer health movement for 15 years, yet at the end of some days she feels defeated when there’s been an issue that she hasn’t been able to help someone resolve.
“For us to engage in the whole health journey, we need an incredible amount of confidence because there is a power differential at play that need to recognise; we need to be a bit brave to ask the questions,” Ms Cox said.
“If you’re the one who is feeling incredibly vulnerable and fragile, you’re overwhelmed by emotion, how do you summon that strength, so we need health professionals to make it as safe as possible, to invite and encourage us to engage in that way.”
Ms Cox called on health professionals to work in partnership with health consumers so they can build their knowledge, rather than seeing consumers as empty vessels that need to be filled with knowledge.
“It’s not about health professionals knowing and us not knowing,” she said.
Health literacy is not just about health information, Ms Cox said – “it’s about listening to our stories, it’s understanding how we want to life our lives and what our goals are. Don’t lose sight of the people that you’re trying to serve when you’re delivering services.”
Health literacy is not a new concept for health consumers, Ms Cox said, it’s what consumer empowerment is all about.
“Health literacy is for all – for health professionals and for consumers and let’s not forget the taxpayer wins as well as health literacy not only improves health outcomes it reduces health care costs.”
And some feedback from conference participants…
Don’t throw away the brochures just yet: Helen Francombe, Consumer Writer, NPS MedicineWise
I got a huge amount out of the conference—including a boost in enthusiasm just from seeing the passion and goodwill amongst the different players in this field.
It was really useful to hear about some major developments in Australia, and in the US.
In fact, one thing that stood out for me was hearing that health insurers in the US are investing in health literacy work, which indicates to me there must be a strong case for return on investment!
One of the highlights was a great discussion about how to present information on the risks and benefits of treatments for consumers, which is a particular interest of mine.
A consumer rep reminded us that the challenge doesn’t end with giving the information. Deciding whether or not to have a treatment can be the really hard part if you face significant risks from both having it and from not having it.
I work for NPS MedicineWise, and we actually have some great information on weighing up risks and benefits of treatments, and the conference gave me some new ideas about how to make sure people get this information when they most need it.
I was interested to hear that doctors only detect one in five patients with poor reading skills, who have greater information needs.
We later heard from a specialist who helped develop a reliable questionnaire to rate health literacy, which she now uses in her practice. The questionnaire is also part of a large study that should bring out some good ideas from people working at the coalface of healthcare.
If I had to pick out some practical pointers I took away from the day, I’d include ‘don’t throw away the brochures just yet’…although video holds a lot of attraction for many consumers, most people still really value printed resources.
I also loved the short session on using cartoons in health information. Humour increases recall and understanding!
Where am I? Health literacy and way-finding: Laura Wuellner, Publishing Editor, Cancer Council NSW
Before attending the conference, I would have described health literacy as a person’s ability to read, write and understand health-related information.
But as the day progressed, it became clear that way-finding is also a crucial aspect of health literacy. After all, if you can’t access the system, how can you understand your care?
Way-finding probably isn’t top of mind because, for many people, getting lost in hospital seems inevitable. (For me, even stepping foot inside switches off my mental GPS!)
Earlier this year, BBC News published an article on National Health Service staff doing what they dubbed “safari rounds” in UK hospitals, searching for lost patients on the wards.
Associate Professor Anne Johnson, a Community Engagement Consultant from South Australia, presented her study on way-finding.
Anne followed Dr Rima Rudd’s intervention strategy framework and shadowed consumers as they tried to do specific tasks, such as finding the facility’s main entrance or looking up its phone number in the Yellow Pages.
The results were clear – some tasks were simple but some were too challenging. For instance, people couldn’t see external signage due to foliage overgrowth. But with a relatively modest budget, most problems were easy to fix.
The takeaway message from Anne is that this kind of straightforward approach (and a willingness to fix what’s not working) can actually improve a person’s ability to navigate the system.
But you don’t know what’s not working until you ask!
Pharmacists ‘stop telling and start asking’: Jenny Mothoneos, Publishing Editor, Cancer Council NSW
Pharmacy staff who participated in a New Zealand project designed to increase their health literacy skills were surprised by how much they learnt.
“I thought the program was going to teach me how to suck eggs,” said one participant in the Healthy Quality and Safety Commission’s Health Literacy Medication Program.
After the program she said: “I think it’s about an awareness of a problem that probably none of us really realised existed. So in that context it was a quantum leap.”
The demonstration project focusing on how pharmacists communicate with consumers ran for three months in two community pharmacies. It trained staff to use a three-step approach when communicating with customers – find out what people know, build health literacy skills and knowledge, and check you were clear.
Another participant said, “It’s a different way of dealing with customers now, before it was only telling, telling, telling, now it’s kind of stopping and asking.”
An evaluation of the project recommended that health literacy training be extended, and that pharmacists should be encouraged to use the three-step approach developed in the project.
And here is some Twitter feedback from participants…
You can find all of Croakey’s coverage of the conference here.