Saturday, October 27, 2012

Health Literacy – a powerful shield against medical errors

Health Literacy – a powerful shield against medical errors
By Rajan Madhok and Nikhil Datar

The first precept of medicine is – Do No Harm. However, 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 system, involving many players and multiple processes. This is why patient safety has become a matter of serious public health concern in recent years, and The World Health Organisation 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 root causes; campaigning for legislative changes to minimise harm due to faulty medical devices or poor professional performance; to empowering patients through raising awareness.

Because the Indian healthcare system is so complex , we need a multi- pronged approach to promoting safe medical care.
 1.         Creating systems for recording, learning and reporting on the quality of medical services and adverse events in a ‘balanced’ manner.
2.         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’.
3.         Empowering patients to question and work with professionals, for example through the Patient Safety Alliance.
 4.        Capacity-building by educating students using the WHO curriculum on patient safety; and training all clinicians through distance learning, for example through the People’s Open Access Education Initiative (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 don’t 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 these 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 to 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 others, and hence the overall PEEST (Political, Economic, Environmental, Social and Technological) context must be kept in mind when designing solutions. There is a danger of making the issue too narrow by focusing solely on individual care, important though that is. We must 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 act as the first line of defence against medical errors. The more involved the patient is the less likely there is to be an error. However, a very common error on the part of doctors is that they blithely assume that patients understand everything they tell them. This is often not true, especially when the patient suffers from poor health literacy. If the patient does not understand the doctor’s instructions, the scope for compromising patient safety rises dramatically.
 Patient Safety Alliance: a case study (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. This initiative was recently started in Mumbai. The Patient Safety Alliance recognises patients as partners and key stake holders in managing their conditions and in health care planning and delivery. The recent mantra “ No decision about me without me” from the NHS in UK, which seeks to place patients at the centre stage of all decision-making, has been a 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 has been to encourage patients to take an active role in their own health care management.
 Since communication failure between doctors and the patients is 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 has impaired meaningful doctor- patient communication. We are helping patients to become assertive and not aggressive, by providing them with the right scripts, so they can ask questions without antagonizing their doctor. 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 brought a sense of empowerment, mutual respect and accountability for all stakeholders.

 These workshops are conducted in various local languages. Audiovisual 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 driver 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 of this problem. This helped to bring this burning issue to the attention of senior government officers who craft healthcare policy, who would otherwise have been health illiterate about patient safety.

 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 an early example of how solutions are being created taking into account the levels of literacy of various stakeholders: for illiterate people the use of verbal communication; for functionally illiterate people, the creation of materials in local language; and the use of media to raise levels of health literacy amongst 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 illiterate and ignorant, the lack of transparent governance adds enormously to human misery. With nearly 4 crores Indians going bankrupt every year due to the high costs of their medical care, the Indian story is a tragedy on the grandest scale. The irony is that when these poor 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, and thus hold its head high amongst developed nations. 

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is www.patientpower.in/2012

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at www.healthliteracy.com

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 4 from that book and has been authored by Dr Rajan Madhok  and Dr Nikhil Datar.

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