Intended for healthcare professionals

Opinion

Health literacy matters

BMJ 2024; 385 doi: https://doi.org/10.1136/bmj.q879 (Published 17 April 2024) Cite this as: BMJ 2024;385:q879
  1. Tessa Richards, associate editor12
  1. 1The BMJ
  2. 2Patient author

New initiatives to boost health literacy in populations and organisations need broad input from patients and the public, says Tessa Richards

“Sunshine, rest, exercise, diet, friends, and self-confidence” are the “six best doctors in the world,” is a popular quote. As a patient with multiple long term conditions, I’d add “peer support” to that list. I know from firsthand experience how the solidarity, insights, wisdom, and resources provided by networked patient communities can support patients and help them become more health literate.1

The World Health Organization emphasises that health literacy is more than the ability to understand and “comply” with health professional diktat. It encompasses “the motivation and ability of individuals to gain access to, understand, and use information in ways which promote and maintain” their own good health, and that of their family and community.23

Raising the health literacy of populations is high on WHO’s agenda. The rationale is that this improves health outcomes, counters misinformation, “pays off” financially, and helps drive ‘“governments to meet their responsibilities” to tackle the determinants of health and health equity.3 Several countries have already adopted national action plans aimed at raising their populations’ health literacy levels.4

A few weeks ago WHO launched a new collaborating centre at the Technical University of Munich, which is conducting pilot studies of health literacy in China, Liberia, and Saudi Arabia and will use the results to develop a format that all 194 WHO member states can use to collect data on population health literacy.5 The centre will also develop material to teach health literacy in schools.

What WHO could, and arguably should, underline more in its health literacy initiatives is the importance of giving people full free access to personal, as well as generic, health information. This access is key to helping people understand and self-manage their health—and correct errors and omissions in their records. The international movement to embed electronic health records should have made this possible by now but, regrettably, the complexity and fragmentation of health systems, and the patchwork quilt of electronic health record providers, has left most people in most countries still struggling to get timely access to all their health information.

Two way street

It’s well recognised that health organisations (as well as individuals) need to be health literate. The attributes of a health literate healthcare organisation were set out more than a decade ago and include embedding co-production of health information, and the co-evaluation of services, with patients and the public.6 They also refer to the need for a health literate workforce and for progress on this front to be monitored.6

In an effort to benchmark health literacy, WHO has set up a network to measure both organisational and population health literacy.7 The network would do well to consider adding a new metric for health organisations: how well they collect and respond to patient feedback. Online models such as Care Opinion offer the best way to facilitate this in a timely way.8

Another metric of organisations’ literacy is how easily patients can find their way through the labyrinthine mazes that characterise so many of them. Some employ “health navigators,” and the debate on their role and impact is ongoing.9 Whether it makes sense to employ navigators to steer patients, rather than co-designing user friendly services with them in the first place, is questionable.

Pitching health information at the “right” level is challenging: the cultural, linguistic, and educational divides are large. In the UK an estimated seven million adults have a reading age of 9, and many struggle to understand the most basic of statistics.10 A “one size fits all” approach to providing health information is far from ideal, not least in consultations with individual patients.

I’ve lived with adrenal cancer for 20 years, pernicious anaemia for 18, and ischaemic heart disease for five. Over this time I’ve learnt a lot about these conditions. My background is as a clinician, medical editor, and patient advocate. Yet none of this is captured in my medical notes, which just record diagnoses. As a result, most of the health professionals I interact with assume that I have the literacy of a 9 year old. It’s frustrating and often results in a poor exchange. And I’m not alone: one fellow patient advocate who has had Parkinson’s disease for decades has told me that she finds it expedient to “dumb down” in her exchanges with GPs.

But this makes little sense. Health professionals need to adapt to an era of democratisation of health information and more empowered patients. One of their key roles is to promote patient agency, shared decision making, and partnership. Assessing people’s experience, capacity, and skills—along with their priorities and preferences—while working out how to support and extend their agency, is surely a key component of professional health literacy.

Wide collaborative effort

Paternalism is yesterday’s model. This applies not just to healthcare consultations but to policy making, including high level efforts to improve the population’s health literacy. Patient communities are an important source of “essential” health information, and initiatives such as WHO’s new network should draw on this knowledge and expertise. People with lived experience of ill health, disability, and the challenge of getting access to effective health services often have a unique understanding of what it takes to engage and help others who face the same challenges.11

This view is shared by Kristine Sørensen, founder of the Global Health Literacy Academy (globalhealthliteracyacademy.org) and president of the International Health Literacy Association (i-hla.org). When I talked to her recently she emphasised that the association was essentially a global platform for health literacy champions, “open to all to ensure a wide representation from not only research and professionals but also from media, policy, patient, and community organisations. It seeks to overcome silos and empower all to be involved in the promotion of health literacy for all.”

Amen to that. Health literacy is too important to be left solely to academics and health professionals.

Footnotes

  • Competing interests: TR has multiple long term conditions including metastatic adrenal cancer.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

References