Chapter 4: Health Literacy: A Powerful Shield Against Medical Errors
By Rajan Madhok and Nikhil Datar
Well-informed patients are powerful agents for promoting patient safety and can act as the first line of defence against medical errors. The more involved the patient, the less likely the chances of an error. Doctors blithely assume that patients understand everything they tell them. This is often not true, especially in the case of a patient with poor health literacy.
The first precept of medicine is -Do No Harm.
Tragically, medicine does cause harm, and The Institute of Medicine Report in 2001 showed that medical errors were the eighth leading cause of death in the USA. This is not surprising, considering the fact that healthcare delivery is a complex service, involving several stakeholders and multiple processes.
Indeed, patient safety has become a matter of serious public health concern in recent years, and the World Health Organisation has responded by creating the World Alliance for Patient Safety. Many initiatives have been launched globally, ranging from efforts to establish the extent of the problem; identifying its root causes; campaigning for legislative reforms in order to minimise harm caused by faulty medical devices or poor professional performance; to empowering patients through raising awareness.
Because the Indian healthcare system is complex, we need a multi- pronged approach to promoting safe medical care through such means as:
- Creating systems for recording, learning and reporting on the quality of medical services and adverse events in a balanced manner.
- Implementing proven patient safety interventions, such as the Global Patient Safety Challenges work on hand hygiene; the surgical checklist; and mandatory compliance with Never Events.
- Empowering patients to question and work with professionals, for example through the Patient Safety Alliance.
- Capacity-building by educating students using the WHO curriculum on patient safety; and training all clinicians through distance learning, for example through the Peoples Open Access Education Initiative (https://www.peoples-uni.org/). However, none of these initiatives can work unless we deal with the issue of literacy and especially health literacy, which is of increasing concern for professionals and policymakers, as it is a primary factor behind health disparities. The Healthy People 2020 initiative of the United States Department of Health and Human Services has included it as a pressing new topic, and designed objectives to address this in the decade to come.
In India, the complexities of poor health literacy are further compounded by the variety of regional languages and the absence of one single unifying language. English, per force, has had to occupy that unifying role. However, this has meant that many are left out, as they dont have sufficient knowledge of English to understand and comprehend this foreign tongue. Indians who have been educated in the vernacular medium are often not able to comprehend basic medical terms, because they are in English.
This double whammy of unsafe care and poor literacy needs to be addressed on a war footing if India is to reduce health inequalities and ensure affordable health care for all. The issue of health literacy is context dependent, just as all health matters are. What may be relevant in one part of the world may not be applicable in another, hence the overall PEEST (Political, Economic, Environmental, Social and Technological) context must be kept in mind while designing solutions. There is a danger of making the issue too narrow by focusing solely on individual care, important though that may be.
We must also acknowledge that the reason why most developed countries have made faster progress is the level of awareness and responsibility felt by their governments. Sadly, in India, there is very limited ownership of such problems, and hence a key issue like health literacy is treated as an orphan. Both policy and key decision makers seem to be blissfully unaware of how serious the problem is and masterly inactivity seems to be the commonest response. However, this particular elephant in the room will not go away if we ignore it. Overall, it seems that we need a three-dimensional model to take the agenda forward; we need to consider:
- Type of action: ranging from governmental policy to lobbying for individual empowerment
- PEEST context: to discover opportunities and challenges and to clone success stories
- Geographical location: what is suitable at a national level and what is best left for local action
Well-informed patients are powerful agents for promoting patient safety and can act as the first line of defence against medical errors. The more involved the patient, the less likely the chances of an error. Doctors blithely assume that patients understand everything they tell them. This is often not true, especially in the case of a patient with poor health literacy. If the patient does not understand the doctors instructions, the scope for compromising patient safety rises dramatically.
Patient Safety Alliance: a case study (@ https://www.patientsafetyalliance.in)
The Patient Safety Alliance aims to create a common platform for health care providers and the public, with the objective of empowering patients and supporting health care professionals in reducing medical errors. Launched in Mumbai recently, the Patient Safety Alliance (PSA) recognises patients as partners and key stake holders in managing their conditions and in health care planning and delivery. Borrowing the "No decision about me without me" mantra from the NHS in UK, patient involvement in all decision-making has been the guiding principle for PSA.
Empowering patients through education and awareness building activities is being done through "Be Alert - Be Safe" workshops, where the community is trained to understand patient safety issues. The aim of these workshops is to encourage patients to take an active role in their own health care management.
Since communication failures between doctors and the patients are a major patient safety issue, the PSA has created a module to overcome this barrier. It has sought to empower patients by encouraging them to ask their doctor questions. The traditional God-like stature of doctors in Indian society inhibits patients from questioning them, and impairs meaningful doctor-patient communication. If we want doctors to get off their pedestals, we first need to teach patients to get off their knees!
We are helping patients to become assertive and not aggressive, by providing them with the right scripts, so they can ask questions without antagonising their doctor. Some doctors may feel threatened by such patients, and by making presentations to medical associations, we are teaching them that well-informed patients can be powerful allies in our quest to improve the care they receive. Educational modules such as "Preventing Infections: Role of patients", "How to avoid medication errors", and "Use of the Internet to find evidence based health information" have instilled a sense of empowerment, mutual respect and accountability.
These workshops are conducted in various local languages. Audio-visual resources specifically recorded in Indian languages are used so that there are no language barriers in understanding the subject. The Patient Safety Alliance has created a few simple toolkits in local languages (checklist for admission and discharge; and medication card, for example) which are freely available on our website. Improving awareness about patient safety and thus creating a demand for safe health care is a major driving force for changing the existing culture to a more evolved culture of prevention and patient safety.
In this movement, key opinion leaders from the community have taken an active role in propagating the message of patient safety. The local media, especially the Loksatta newspaper, was very helpful and ran a series of articles in Marathi (the local language) to raise awareness on this issue. This helped to bring this burning issue to the attention of senior government officers who craft healthcare policy, who would otherwise have been casual about health literacy. Adaptation of international material to Indian situations; creation of resources in local languages; and creating a culture of awareness have been the key interventions to promote patient safety. These efforts have also made patients more aware about how they can contribute towards safer health care.
This is just one example of how solutions are being created taking into account the levels of health literacy in various stakeholders: for uneducated people, the use of verbal communication; for functionally literate people, the creation of materials in local language; and the use of the media to raise levels of health literacy amongst key decision-makers.
Patient safety is a global problem, but its impact is much more severe in India because of our widespread poor health literacy. While it may be in the best interests of corrupt politicians to keep their vote banks ignorant and uninformed, the lack of transparent governance norms adds enormously to patient misery. With nearly four crores Indians going bankrupt every year due to the high costs of medical care, the Indian story is a tragedy of a mammoth scale. The irony is that when people do access healthcare, very often the care is unsafe.
"Education, education, education" -the favourite sound bite of politicians sadly remains just that -a sound bite with limited follow up. India needs a massive programme of not just literacy but also health literacy for budding clinicians and policymakers if it is to ensure universal, affordable and safe healthcare delivery, and hold its head high amongst developed nations.