A noteworthy feature of this edition of Health Voices is how our headline trio are so often intertwined in health outcomes. Safety, quality and literacy perform together like a trio of musicians.
The significance of safety and quality is perhaps more evident than health literacy. In patient care, we can have safety and quality without health literacy, but the outcome is unlikely to be as positive as when the patient is engaged and informed – is literate – about the care.
And as articles in this edition describe, there are increasing examples of reciprocal benefits: consumers with good health literacy can contribute to safety and quality by communicating their positive and negative experiences with healthcare so that improvements can be made, and good practice perpetuated.
Each musician in the trio has a separate but vital part. In Australia, safety, quality and literacy are together to play a stronger role with First Nations peoples whose health status lags so significantly behind that of other Australians.
The Australian Commission on Safety and Quality in Health Care has recently moved to fill a gap in the National Quality and Safety Health Service (NQSHS) Standards to consider the cultural and clinical needs and the preferences of Aboriginal and Torres Strait Islander people.
The CEO of the Commission, Adjunct Professor Debora Picone, writes that six new actions have been developed after comprehensive consultation and collaboration with Aboriginal and Torres Strait Islander people and health service representatives to help improve quality of care and health outcomes.
Australia-wide, it appears that improvements in safety and quality of modern health care are accompanied by more health literacy among consumers.
“Embedding these actions in the NSQHS Standards, where they cannot be overlooked, will go some way to reducing the gap in health outcomes between Aboriginal and Torres Strait Islander peoples and other Australians,” says Professor Picone.
She says this is a group of Australians who have been disadvantaged in accessing healthcare, disadvantaged in receiving culturally appropriate services, and disadvantaged in the health outcomes they experience.
The development demonstrates the growing attention being given to the promotion of safety and quality. Australia-wide, it appears that improvements in safety and quality of modern health care are accompanied by more health literacy among consumers.
CHF’s chair, Tony Lawson says that the value of safety and quality accreditation has been hotly debated. But, almost without exception, reviews which have occurred following adverse events have called for strengthening of safety and quality systems, high level scrutiny of practices and the greater involvement of consumers in all aspects of the health system.
Overall, Australian Bureau of Statistics survey results show Australian consumers generally have a healthy understanding when it comes to health literacy, Leanne Kelly writes. However, those most vulnerable in our community were less likely to have a positive view of their health literacy skills. To maximise the future well-being of Australian consumers and the benefits of our health system, a central component of all future health policies and programs should be health literacy and it should be extended to those who need and would benefit more.
GP leader, Dr Evan Ackermann, warns that we need to take more heed of contemporary healthcare failures. He points to headline problems resulting from what he says has been a decades-old perfunctory approach to patient safety in primary care. Aged care scandals, opioid related deaths from managing chronic pain, hospitalisations from medication adverse events and investigations into complementary therapies have all hit the headlines. Dr Ackermann says it is time to make patient safety a health policy priority and redesign our primary care systems accordingly. “The safety problems we are now experiencing in primary care were mostly foreseeable and certainly preventable.”
Professor Jeffrey Braithwaite says there is a “stubborn statistic” that ten per cent of patients suffer at the hands of the system – especially when in hospital – when something goes wrong such as an incorrect dose of medicine or a wrong test is ordered. But instead of focusing on what’s gone wrong it might be time to focus on the nine in every ten patients entering the hospital who experience no harm. Patient-centred care and integrated services care are among the strategies which would yield better outcomes.
On a similar theme, Professor Jean-Frédéric Levesque says that increasingly, clinicians and clinical teams seek to provide patient-centred care – eliciting patient preferences, supporting informed choice and engaging patients in decisions about their care. Values and judgements are used to tailor clinical decisions and actions to the social and psychological needs of patients. This means that the best care for one patient will not be the best care for all patients.
Carol Bennett says it will be impossible to manage the growing prevalence and impact of chronic pain without providing consumers with the skills they need to self-manage their care. We have seen the devastating results of relying on purely a biomedical model to deal with this complex condition. While the ‘opioid crisis’ here in Australia is not comparable in magnitude to the issues faced in countries like the United States, opioids and related harms continue to represent an increasing risk to Australian communities.
Safety, quality and literacy are important considerations in the development of a genomic research project involving an Aboriginal community. Researcher Jack Nunn writes about the ‘Aboriginal Personalised Medicine Project’ which has involved local Aboriginal people in co-designing a proposed research project which aims to sequence DNA from participants in order to create a clinically useful reference genome. There is a paucity of genomic data about Aboriginal ancestry groups and this may increase existing health inequalities in Aboriginal communities, as certain populations of people will not be able to use personalised medicine as effectively as others, he says.
David Bunker and Michelle King bring their challenging experience in caring for their daughter, Daelle, who lives with severe disabilities, to make the case for comprehensive digital health records. They say life for Daelle and her parents would be dramatically improved if other carers and clinicians could have immediate access to such information as Daelle’s seizure management plan and medications through her digital health record.
Hindsight shows that in nearly every instance of avoidable harm, consumer letters, emails and phone calls have attempted to warn us about system failures that contributed to that harm, says Louise McKinlay. Partnering with consumers is a key driver behind the mission of Safer Care Victoria.
Dr Danielle Muscat, Professor Kirsten McCaffery and Professor Don Nutbeam point to evidence from more than 300 articles published in public health and medical journals drawing attention to the current gap between the literacy demands of health information materials and the skills of the intended target audience. They have recently partnered with Illawarra Local Health District to evaluate an organisation-wide health literacy approach to improve the patient information and education materials in ways that ensure they are more easily understood and provide support for practical action.
Lynda Condon says there remains a sense that health consumers are an “inconvenient guest” in formal consumer participant forums. She and her peers believe there’s an ongoing need to ensure consumer participation is a true partnership, respected and valued, and with outcomes adding deep insight to the broader patient and clinical community, as well as the quality systems of the hospital.
Another vital question for consumers and health professionals is how to improve care coordination for people with complex and chronic conditions without placing an extra burden on existing resources. Dr Kristal Coe reports on a Health Care Consumers Association project in the ACT which raises the potential benefits of patient navigators to overcome the gaps in coordinated care of patients with chronic conditions.
Health literacy poses special challenges for new arrivals to Australia. Wendy Bowker and Meghan Mann ask us to imagine being part of a rapidly growing culturally and linguistically diverse community, where you do not know how and where to access healthcare for your sick child and how to communicate your concerns. They describe how Healthdirect Australia is seeking to ensure the right information gets to vulnerable and hard-to-reach groups, for whom improved health literacy may enable appropriate access to information and services and reduce poor health outcomes.
Ethics represents a central element of quality, safety and literacy. Tim Benson looks at two case studies, where patients have not been told the complete story about medical device costs and where a surgeon fails to give balanced information on performance outcomes. We can see that not all clinical consultations are conducted in an ethical manner allowing the patient to give genuine informed consent.
Quality, safety and literacy should be at the heart of even the most routine health care encounter. Dr Alice Lam lists what patients need to consider when visiting a doctor. As she says, many GPs, herself included, have been tempted at times to start bombarding the patient with questions, thinking they already have the answers. Despite this, the first minute or so of the patient’s visit is a precious time to explain your case to the GP in your own way, she says.
For CHF’s part we recognise the contribution we can make to the health literacy agenda. We have launched #BeHealthAware, a health literacy information portal for consumers and carers and have just completed the field work on a major national patient activation consumer segmentation study of 1,800 people with two or more chronic conditions to better understand their levels of activation, help-seeking behaviour and healthcare support needs. We continue to advocate the concept of patients as partners in care and for shared decision making, patient activation and evidence-based self-management programs to be integral to health care reforms.