Improving Doctor-Patient Communication by Promoting Health Literacy

When people talk about the need for health literacy training, they often think first about what learners need to do for themselves. However, there is also a pressing need to teach doctors, nurses and medical students how to communicate more effectively with low-literacy patients. It is important for health care providers to speak the language of the patient - after all, there’s little point in making a brilliant diagnosis if the patient ends up not following the doctor’s advise because he did not understand what the doctor said ! Literacy results from an interaction between the reader and the writer and it is not fair to criticize a patient’s reading skills without considering the skills of the author. The mismatch between what people need and what the healthcare system offers is unhealthy and can be deadly. Too often, there exists a chasm of knowledge between what doctors know and what patients understand. Both parties are equally responsible, and to understand why, we need to look at two concepts – the Curse of Knowledge and the ASK Problem.

“The Curse of Knowledge”. The curse of knowledge, otherwise known as the paradox of expertise, is one of the reasons experts have trouble using plain language to communicate their ideas to others who do not share the same expertise. Doctors spend a great deal of time with other doctors, but not enough with patients with limited literacy skills, which means while they speak fluent “medicalese”, they find it hard to talk to patients in plain language. 

The “ASK” Problem stands for the Anomalous State of Knowledge. This occurs when the patient does not have the knowledge needed to ask the right questions to make a sound decision. In order to ask good questions, we must have a fundamental understanding of the problem at hand. The more complex the information to be processed, the more difficult it is to ask the right questions. 
To solve these issues, both patients and doctors need training in how to better communicate with each other. For low literate patients, remember that the spoken word is far more important than written communication. Here are some tips for clear verbal communication. None of this is rocket science – it’s simple common sense. Just pretend you were explaining diabetes to your 75-year old grandmother who is hard of hearing.


1. Organize your information. 
2. Use common words, not technical jargon. 
3. Give your patients a chance to express how they feel and to tell the story of their illness. 
4. Make direct eye contact. 
5. Use written information as a back-up. 
6. Plan with your patients what they can do. 
7. Let your patient know what you are thinking. 
8. Explain procedures and ask permission during examinations. 
9. Focus on your patient, not on notes, X-rays or the computer screen. 
10. Check that your patients have understood what you have said. 



Translation and Interpretation


It is difficult to achieve seamless communication between patients and doctors, even when they speak the same language. When there are language and cultural barriers, the difficulties are multiplied a hundred-fold. It may seem that an easy solution to the language barrier is to simply translate your pamphlets and materials into local languages. However, because of cultural differences, the materials probably won’t be as useful because there is likely to be a mismatch in values and beliefs. This is what makes translating patient educational materials such a challenging exercise. 

Before you embark on translating yourself, check to see if there are appropriate materials already available in the languages you need – there is no need to reinvent the wheel. A few excellent websites to check include: Health Information Translations (http://www.healthinfotranslations.org); Ethnomed (http://ethnomed.org); Spiral (http://www.library.tufts.edu/hsl/spiral/index.php) and Healthy Roads Media (http://www.healthyroadsmedia.org). It is shameful that the Indian government has failed to create a suitable library of patient educational materials in regional Indian languages.

If you decide to translate the material yourself, be sure to enlist the help of your patients! Foods, customs, traditions and rituals are often different between cultures and they must be relevant to the reader in order to ensure comprehension. Once translated, materials should be back translated into English to ensure that no changes in meaning or content were introduced. 

Interpreters can assist both health professionals and patients in improving health literacy, and better outcomes have resulted from the use of competent language services. The main function of the interpreter is to convert a message from one language to another, preserving the original meaning at all times. Many view interpreters as neutral individuals who transmit information back and forth - the "interpreter as a conduit" model. In real life, however, interpreters are often active agents, negotiating between two cultures, and assisting in promoting culturally competent communication. The translation may not be literal and may involve the use of metaphors and ideas that have no direct equivalent in the second language. This role is closer to that of a co-diagnostician, as interpreters decide which medical information is valuable, seek illness-related information independently, and participate in the diagnostic process. A good interpreter serves as much more than just a translator, but also as a cultural bridge between the patient and provider. “As interpreter, my heart is with the patient. I interpret what the patient feels and where he is coming from. But my mind is with the provider – where their knowledge, their wisdom and their scientific values are. (Navajo Interpreter)”

The use of family and friends as interpreters is not always in the best interests of the patient. Unless the situation is an emergency, there may be issues with confidentiality, conflicts of interest, and a lack of familiarity with medical terms. Untrained interpreters may miss, add, or substitute information, and they often do not understand the importance of interpreting everything the patient says. They are likely to include their own thoughts and opinions and impose their own judgments as they speak. For example, if a family member knows someone that was cured of a similar condition using a certain medication, they may be convinced that the same medication will work on this patient. They might not understand that differences between patients can mean significant differences in treatment needs. In addition, it is very difficult to be objective when you are talking about a loved one. Finally, patients themselves may be less likely to be open about confidential or personal information with certain family and friends. When possible, a trained health interpreter is best. If one is not easily available, you can use the help of online interpreters using Skype; and there are also commercial organisations that offer these services through the telephone.

The health issues encountered by immigrants reveal the need for interactive, two-way health literacy efforts. True dialogue can only be achieved if health literacy is perceived as a goal for both the patient and the provider. In the centre column are suggestions for both sides to improve the likelihood of a successful health outcome.

Patient navigation and patient advocacy

In your practice, you may wish to consider using patient navigators or patient advocates, who help low-literate patients with the complex process of managing their health. In 1990, Dr. Freeman established the first Patient Navigation programme at a hospital in Harlem, New York, USA when he noticed that many poor or low-literate patients were either avoiding cancer screening altogether, or not following through on their abnormal test results. The purpose of the programme was to help improve access to cancer screening and ensure proper follow-up among poor patients. After 5 years, results showed that the 5-year survival rate for these cancer patients increased from 39% to 70%! Poor people face many barriers to getting cancer screening and appropriate follow-up. These include: financial constraints; transportation; and bias amongst healthcare staff. Patient navigators are individuals who guide patients with suspicious test results (e.g. possible cancer), through the various complex procedures in cancer care and help ensure they get the right tests and follow-up at the right time. They also assist the patient to receive treatment with respect and compassion.

Patient Advocates (http://www.patientadvocate.org) are similar to patient navigators, but their role is expanded to include help with filling out complex forms, accessing healthcare and disability service, s and negotiating financial issues such as medical debt. They help patients navigate the maze of health insurance throughout their care. 

Patient advocates come from many health professions including nursing, medicine, and social work. They have the skills needed to assist patients (and their families) with navigating the complex maze of forms, buildings, and people involved in the healthcare system. They use their skills to help patients make the right decisions for themselves.

The most effective patient advocates are trained in low literacy and cultural communication issues and in how to navigate the healthcare systems in their area.


Many hospitals have a Department of Medical Social Work; and medical social workers are trained professionals who can help your poor patients to get the medical care they need, at an affordable rate. Learn to make use of their skills!

Health Coaches

Most doctors tell patients to improve their lifestyle in order to remain healthy. However, no matter how well intentioned your patient maybe, we all know that it’s hard to lose weight; stop smoking; and start exercising. Even if your patients know what they need to do, actually incorporating these changes in their daily behaviour can be very difficult. This is where health coaches come in. A health coach is trained to help people break their goal into manageable steps, nudge them in the right direction, track their progress, and identify and overcome personal roadblocks. Like traditional coaching, health coaches utilize goal setting, identification of obstacles, and use of personal support systems, thus setting up an accountability partnership that is focused on helping people to reach their health goals. Doctors just don’t have enough time to spend with their patients going over nutrition, lifestyle and stress reduction. Health coaches can fill that gap, thus preventing health problems from becoming worse.

Learning from patients 

Communication is a two-way street, and your task is not only to teach your patients, but to learn from them as well. If you keep your eyes, ears and mind open, you will find that patients have expertise that can be used and shared, if they are systematically involved. You owe it to your patients that they feel respected and treated as people who bring practical experience to the table.

•    Make use of the expertise that your patients bring as learners. 
•    Respect, involve and appreciate them. 
•    Recognize that patients can teach health professionals. 
•    Support organized learners’ groups and activities.


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 free 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, Medexplain : Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 7 from that book

Health Literacy – Translation of Patient Education Materials

India being a country of linguistically diverse population the importance of translating health education material cannot be undermined.  There have been many attempts in modern times to make regional language health information available to the masses.  One common thread which runs throughout the country is the national language - Hindi. We believe that access to researched, evidence-based health information is a right of every citizen of our country !

Health Education Library for People will be participating in the Health Literacy Month - October'12 to bring about awareness and emphasize on the importance of health literacy.

Putting Patients First Through Health Literacy - conference scheduled to be held on Sunday, 2 Dec is a step forward in this direction.  Please visit our conference website: www.patientpower.in for complete details on how to register.

Invitation to Promote Your NGO: Health Literacy@HELP

Health Education Library for People (HELP) invites you to be a part of the health literacy campaign.  If you think your NGO is in anyway involved in creating awareness on health related matters or directly working towards improving health literacy then this forum is meant just for you.  Be a part of the 2 month long pre-conference activities.We would love to know more about your work in this direction.

For this purpose, HELP will be organizing talks by such reputed organizations like yours.  You may send your representative to give a short presentation on the kind of work your NGO does or is planning to do in future which will help in improving health literacy.

Your talk will be for an approximate duration of 1 hour.  We will video record the talk and put it up on your page on our website.  All our readers (around 12,000) will be intimated to attend your talk.  These pre-conference talks will be scheduled during the second half of Sep and October’12.  In November’12 we will hold an E-poster competition in which you may send in your entries.  We will send you separate guidelines on this.

A little more on our plans…..

Putting Patients First through Health Literacy  conference has been scheduled for Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy Consultant from US has been invited to conduct this workshop. There are only 10 seats reserved for NGOs.  Other seats will be filled in by participating doctors and people from the healthcare industry.

NGOs interested in holding pre-conference seminars at HELP may please register by clicking on the box below or contact Anjoo or Asma at HELP : 22031133.

HOW INFORMATION THERAPY HELPS PATIENTS TO MAKE SENSE OF THEIR MEDICATIONS

2nd Annual Conference
USING INFORMATION TO PUT PATIENTS FIRST
Free Registrations: www.patientpower.in

Mrs Kapoor visited her GP for a ‘nagging pain’ in the stomach. Her GP prescribed her a course of antacids. While Mrs Kapoor did get some temporary relief with the medicines, she decided to visit a specialist. The specialist gave her stronger tablets and she took them, while also continuing her GP’s medication. This interaction of drugs exacerbated her problem, and she found herself back to square one. As an educated patient, Mrs Kapoor should have informed the specialist of the medicines that she had been taking. It might well have resulted in a different prescription and a better outcome.

The right drug for the right patient in the right dose by the right route at the right time: this golden rule sums up the ideal prescription – and it seems like such a basic and simple rule. What’s disturbing is how often this rule is broken today in daily medical practice. The good news is that Information Therapy prescriptions can ensure that we follow this simple rule. Medicines are powerful – and every drug can have beneficial effects and undesirable effects. Information Therapy makes sure that the following questions have been clearly answered before taking any medicines.

What should you do if you are taking other prescribed or over-the-counter medicines? What are the short- and long-term risks associated with the medicine? Are there less risky alternatives? What should you do if you inadvertently miss a dose? The list is not exhaustive. As a patient, it is your right to ask as many questions as you wish to clear any doubts.

Your first step should be to read what your doctor has written (no matter how illegible the writing may be), and to clearly understand what the 'hieroglyphics' mean. Don't leave with questions unanswered: ask your doctor or chemist for an explanation of any confusing terms on your prescription. A very useful reference book you should consider purchasing is the Indian Drug Review. This book is easily available at any medical bookshop and is an excellent compilation of details on all the prescription drugs available in India: for instance, their cost; dosage; therapeutic action; drug interactions; and side-effects. Though this book has been written for doctors, it is easy enough for any layperson to use. Not only will this book help in understanding the medicines you are taking, but it may also help you to save money, since you can select a less expensive brand of medicine, after discussing the matter with your doctor.

Your doctor can also help you save money by prescribing generic drugs. ‘Generic’ means that the drug is not protected by trademark registration; and the generic name of a drug is usually a shortened form of its chemical name, so that any manufacturer can use it when marketing a drug. Usually, a manufacturer uses a trade name (or brand name) as well as a generic name for a drug, and you should be able to identify the generic name and the trade name of every drug you are taking. Generic drugs are generally priced lower than their trademarked equivalents, largely because the former are not as widely advertised as the latter. Also, do keep in mind that for certain drugs, it is not advisable to 'shop around' for an alternative, because differences can exist between brands of certain drugs.

The amount of medicine you buy at a particular time depends on several factors, the most obvious one being how much money you have, or how much the insurance company will pay for each purchase. Medicines to treat heart disease, high blood pressure, and diabetes may be purchased in bulk because you will need to take such medicines for prolonged periods. The chances are that you will pay less per tablet or capsule by purchasing large quantities of drugs, and save quite a bit of money: do ask the chemist for a bulk discount!

While medicines are useful in the treatment of certain illnesses, the overuse of drugs has taken its toll, not only in the form of unnecessary expenses but also in the form of sickness, and even death, as a result of an adverse reaction to the medicine. Patients still believe that there is a pill for every ill - and this desire for instant relief translates into billions of rupees for millions of pills, potions, ointments and powders. The pharmaceutical industry in the second-most profitable in the world –right after illegal drug trafficking! Most people take one medicine at least weekly, and more than 25% of the world’s population consumes drugs on a daily basis. Most patients are not happy unless the doctor prescribes a medicine for them - whether or not they really need it. Often, doctors too will contribute to this ‘overmedication syndrome’, and the huge advertising budgets as well as the largesse of pharmaceutical companies lure them to continue doing so on a regular basis.

You must, however, understand that no drug is without its side-effects - after all, anything that has the potential to benefit your body also has the potential to do harm. A 'therapeutic effect' is a desired effect, and a 'side-effect' is an undesired effect - but both are simply effects of the same drug on the body, and go hand in hand. Remember that 80 percent of all ailments are self-limiting and require no treatment. Therefore, think carefully about the costs and risks as well as the benefits before taking any medicine.

You should be especially wary when your doctor prescribes the ‘latest’ and newest drug. For one, such a drug is likely to be much more expensive than its 'older' counterparts. Drug companies nowadays spend large amounts of money in order to induce doctors to prescribe their newest products, because they are much more profitable for them. Also, remember that newer does not always mean better - in fact, new drugs may be more dangerous. Since they have not been used for long enough, some of their harmful effects may not become apparent until many patients consume them over a long period of time. Older medicines, which have been tried and tested over many years, are a safer bet, because doctors have considerable experience with them, and are aware of their risks and benefits. For example, Duract, a new non-steroidal anti-inflammatory drug (painkiller), was withdrawn from the market just a year after being approved for use in the USA (after having undergone rigorous testing), since it was linked with a dozen cases of liver failure, four of them fatal!

Surprisingly, no one knows how many deaths, injuries, and side-effects prescription drugs cause each year - there is no agency which monitors these effects. Who's responsible for this modern epidemic of drug-induced disease? All of us! Pharmaceutical companies, for a less-than-rigorous study of their approved drugs; physicians, who incorrectly prescribe drugs, or over prescribe the 'latest' drug; patients who don't follow instructions or don't tell their physicians about the other drugs they are taking; and even government agencies for not monitoring drug safety more effectively. As a patient, you can help to protect yourself from a therapeutic misadventure by not opting for a newly approved drug unless there aren't any other, well-established alternatives.

Older people are especially prone to the problem of unnecessary drugging. Often, once a doctor starts a patient on a medicine, the latter continues taking it, whether or not he needs it anymore. And each specialist adds to the drug overload, without having a clue about what else the patient is taking. Not uncommonly, it turns out that only one or two of the assortment of drugs is really needed and, once the unnecessary medicines are eliminated, the patient starts feeling much better. In contrast to today's enthusiasm for drugs, it is wiser for you to be a ‘therapeutic nihilist’, in order to let the body heal itself whenever possible.

What can you do to help prevent medication errors? The answer is simple. Learn to ask questions. Just because you haven't been trained as a doctor doesn't minimize the important role you play in preventing errors with regard to your medicines, or those for your family. By the very process of asking questions about your medicines, you understand why you are taking them, how to take them, and what to expect so that you can detect potential errors. The most common causes of medication errors are: similar drug names, similar packaging and labeling, and illegible prescriptions.
The following factors should always be borne in mind:
Avoid medicines to the extent possible. Pregnant women, for example, generally get along fine without drugs (or with very few drugs).
Periodically, bring all your medicines, including over-the-counter drugs, to your doctor for review. Ask your doctor for an information prescription, so you can check for drug side-effects and interactions. Be skeptical of patently extravagant claims made by pharmaceutical advertisers.

Remember that ‘big guns’ are not needed to treat self-limiting or non-dangerous diseases, and that side-effects of medicines may well create more problems than the original illness.
Take oral medicines as far as possible. Such medicines are usually equivalent to injections, and are both cheaper and safer. Many patients still naively believe that injections are more ‘powerful’, but this is purely a myth!
Beware of physicians who prescribe new medicines at each visit without modifying or discontinuing previously prescribed drugs. Many patients are not happy unless the doctor gives them a medicine for their problem, even if this is not required - and many doctors are happy to pander to their patient's fancy. In fact, many patients still judge the calibre of the doctor by the length of his prescription and by the cost of the medicines he prescribes!

Taking two or more drugs at a time can complicate matters considerably, since they can interact with each other, resulting in either adverse effects, or a reduction in their efficacy. The best way of minimizing this problem is to limit the number of drugs you consume, taking only what is strictly necessary.

OTC drugs

Drugs that can be purchased without a prescription are referred to as over-the-counter (OTC) drugs, and these have become a worldwide phenomenon in the present era of globalization. Common OTC medicines include pain relievers, laxatives, cold-relieving preparations and antacids. They are consumed rather indiscriminately by millions of people, but think carefully before purchasing an OTC drug. Do you really need a medicine in the first place? For example, rather than popping a sleeping pill into your mouth every night, a glass of warm milk may provide a better solution for your insomnia. Similarly, simple measures such as steam inhalation and salt-water gargling can provide as effective relief from a sore throat as can medicines. Unfortunately, most people would rather take a pill for every ill. More than 100 OTC drugs are available for treating the common cold - none of which have been shown to be effective.

Just because a medicine is available over the counter does not mean it is completely safe, and you should always check with your doctor before taking it. Sometimes, OTC drugs can actually be harmful. For example, taking painkillers over many years can cause kidney failure and swallowing tablets to self-treat a fever may mask certain illnesses such as tuberculosis or malaria. Don't just depend on a friend's advice or on your chemist's suggestions: always discuss OTC drugs with your doctor.
Discuss your medication with your chemist. Unfortunately, chemists still represent a very underutilized resource in India. Every chemist's shop must have a duly qualified and trained pharmacist. Pharmacists are professionals who have done a four-year course in a pharmacy college and are knowledgeable about medicines and their effects. If you have any doubts, seek out the pharmacist in the chemist's shop; the clerk or the shopkeeper may not know anything about medicines.

You should be able to identify your medicines properly. Many errors are made at home by taking a wrong tablet or capsule that appears similar to another family member's medication. The ability to recognize your medicines can help in preventing you from taking the wrong drug. If you believe an error has occurred, contact your doctor, pharmacist, or nurse as soon as possible. Do not take the medication until all your doubts have been dispelled.

As far as possible, patronize the same chemist for prescriptions drugs as well as over-the-counter drugs. A complete record of your medication history can be kept at the chemist's shop, and some modern chemists have now installed computers that allow them to store the details of the medicines you are taking. This precaution is especially important if more than one physician has been prescribing medicines. A competent pharmacist can also spot hazardous combinations of medicines, and help you avoid possible dangerous drug interactions.

Always keep medicines in their original containers. Many drugs look alike and this can cause an ‘identification crisis'.
Never use another person's medication; and never experiment with medicines just because a friend recommends them. Similarly don't ‘play doctor’ by lending your medicines to your friend or relatives.
Discard all medicines once they have reached their expiry date.
Always remember that you are the one taking your medicines. Therefore, ensure that you are well informed about them, so that you can take them safely. Every time a medicine is prescribed, please make sure that Information Therapy is prescribed with it as well. In most instances, it is as important as the medicine itself!

HOW INFORMATION THERAPY CAN PROMOTE SAFER CARE

2nd Annual Conference on
Using Information Therapy to Put Patients First in India:
Register Now !




HOW INFORMATION THERAPY CAN PROMOTE SAFER CARE

Rajan Madhok,MB BS MSc FRCS FFPH ,
Medical Director, NHSManchester,ENGLAND
and GAPIO Lead on Patient Safety


Nikhil Datar
MD DNB FICOG FCPS LLB DGO DHA
Consultant Gynaecologist,HindujaHospital, Mumbai
and Commonwealth Fellow 2009, NHSManchester,ENGLAND
Correspondence to rajan.madhok@btinternet.com

HOW INFORMATION THERAPY CAN PROMOTE SAFER CARE

Most patients agree that Information Therapy makes sense. Owing to the anxiety when one visits a doctor, a majority of patients forget half of what the doctor tells them. In such instances, a summary sheet at the end of the consultation can be helpful. An electronic medical record can also ensure that all the information is easily available in one place. This results in a more holistic assessment, and ultimately, better care. But can Information Therapy also help with ensuring safer care? And how can it do so? These are the issues we explore in this chapter. First though, a few words about patient safety and why it is so important.

WHAT IS PATIENT SAFETY

Hippocrates, the father of medicine, exhorted doctors to ensure that their patients did not suffer unnecessarily and his dictum, ‘First, Do No Harm’ (Primum non nocere) has been the guiding principle for doctors worldwide. Medicine in those days was empiric and literally a ‘hit and trial’ affair, which is why such a caution was needed. With the recent dramatic advances in science and technology, most people naively assume that although modern medicine cannot cure everything, it must be much safer. Whilst they would be largely right, it is wrong to assume that modern medicine is completely safe. 21^st century medical care is much more complex, so organising and delivering it safely is a major challenge. Medical knowledge is evolving rapidly, making it difficult for doctors to keep up with newer trends. Since there are so many different players involved now (primary care physicians; organ specialists; nurses; physician assistants; hospitalists; technicians; medical informatics specialists; administrators), there is limited understanding of how healthcare systems can be made to function smoothly. Compared to other safety critical industries (especially aviation), medicine has not yet fully adopted the principles and practices necessary to ensure that complex health care can be delivered safely. The Institute of Medicine’s report ‘To err is human’ assessed that modern healthcare was the sixth leading cause of death; and that more deaths were caused by iatrogenic errors, as compared to breast cancer or road traffic accidents in the USA (Accessed 7 Aug 2011 http://iom.edu/Reports/1999/To-Err-is-Human-Building-A-Safer-Health-System.aspx). It has been estimated that almost one in ten patients suffers an adverse event in the hospital; and there is a one in 300 chance of dying in a hospital due to a medical error. Modern medicine is clearly a two-edged sword: on the one hand it can alleviate suffering and on the other hand it can cause harm. Patient safety therefore has become an important public health issue.

HOW CAN INFORMATION THERAPY HELP TO ENSURE SAFER CARE?

Let us take one example to see how this may work.

Healthcare-associated infections (HCAI), acquired in a hospital or clinic, are the most frequent adverse events in healthcare delivery worldwide. Millions of patients are affected by HCAI worldwide each year, leading to significant mortality and financial losses for health systems. Of every 100 hospitalized patients at any given time, 7 in developed and 10 in developing countries will acquire at least one kind of HCAI. The burden of HCAI is also significantly higher in low-income countries than high-income ones, especially in intensive care units and in neonates. For example, newborns are at higher risk of acquiring HCAI in developing countries, with infection rates three to 20 times higher than in high-income countries. (From http://www.who.int/gpsc/country_work/gpsc_ccisc_fact_sheet_en.pdf accessed 7 August 2011)

Practicing good hand hygiene is a simple measure that can dramatically reduce the chances of getting an HCAI. This led the World Health Organisation (WHO) to launch a global campaign to improve hand hygiene among healthcare workers: ‘SAVE LIVES: Clean Your Hands’ is a major component of ‘Clean Care is Safer Care’ and can help reduce the spread of potentially life-threatening infections in healthcare facilities.

This is not a new revelation and the benefits of hand hygiene have been well documented in the past. Semmelweiss in 1847 demonstrated that obstetricians could cut down dramatically the number of women dying after labour by simply washing their hands between deliveries. However, he had great difficulty convincing his colleagues to do so and was hounded out of his hospital attachments for daring to speak out against doctors. Sadly, getting healthcare professionals to change their existing practices has not become any easier since then!

This means we now have a choice. We can continue relying on healthcare professionals to follow good practice to protect patients from HCAI (even though we know that they will often not do so in real life); or we can explore whether patients can do something about it.

This is where information therapy can play an active role! It can be used for the following:

- Advising all patients of the importance of HCAI since not many patients are aware of the magnitude of the problem.

- Convincing patients and their relatives about hand hygiene and getting them to use disinfectant hand sanitizers while in hospitals. This is especially important inIndia, where relatives play such an important role in providing nursing care to patients.

- Making hospitals publish their statistics of hospital-acquired infections. Ideally there should be open reporting of data, showing trends and improvements over time.

- Getting patients to request the healthcare professional ‘touching’ them to wash their hands.

So, here is a sample Information Therapy prescription for a patient going into a hospital:

1. Please be aware that hospitals are dangerous places and that your hospitalisation can cause you to acquire an infection.
2. You can reduce your chances of getting an infection by limiting the number of your visitors; and by asking them to wash their hands and to use disinfectant.
3. Do request your doctors and nurses to wash their hands before touching you or doing a procedure.

This kind of openness and transparency can empower patients; and reinforce the fact that the hospital is doing all it can to ensure that patients are safe and that the risk of errors is being actively minimised.

The Planetree model (www.planetree.org) is an excellent example of how hospitals can greatly improve patient outcomes and reduce patient errors by actively involving patient (and their family members) in medical care. It is the patient who has the most at stake; and by ensuring that patients are well informed, hospitals can help to reduce complications and errors considerably! This will help them to improve patient satisfaction scores and increase patient loyalty, which in turn will result in better hospital occupancy and boost their bottom line. It will also help to reduce the risk of lawsuits because of medical errors!

This prescription can be in the form of written notes, or in an audiovisual form since the use of multimedia can improve patients understanding and retention by over a third. In summary, Information Therapy increases the patient’s ‘ownership’ and helps the patient to explore alternatives by empowering them to choose appropriate care and set realistic goals. The doctor patient relationship becomes more open, based on partnership (rather than paternalistic) and shared decision-making can be achieved.

Information Therapy is equally useful in the doctor’s clinic as well. We all know that often a patient will need to visit different specialists. Unfortunately, as a result of this, care gets fragmented, and problems such as drug interactions are very common. By ensuring that the patient knows exactly what medications he is taking and why, these preventable problems can be avoided with the help of Information Therapy! Information Therapy acts like an immunisation against ignorance. It helps to make sure that things don’t fall through ‘in between the cracks’ and puts the patient back in charge!

CHALLENGES AND OPPORTUNITIES FOR INFORMATION THERAPY

To make information therapy work we have to address some challenges.

First, most people are still unaware of the problem of unsafe care: they believe that modern medicine is a force for good and that doctors and nurses are highly professional people and that they are in ‘safe hands’. So we do need to acknowledge that there is a problem and it is imperative to promote safer care. Second, we still do not know enough about the extent of the problem. How many incidents are occurring? Where? When? What kind? We need to ensure that appropriate data is collected. This will help us to understand the underlying causes of these errors and enable us to design solutions. Finally, do patients or their carers/relatives feel empowered enough to question, and indeed challenge, their doctors? Even doctors often shy away from questioning their own personal doctors when they are ill!

Information Therapy can be a major force in improving patient safety, and we need to create an ecosystem where patients can safely demand that they be given Information Therapy; and doctors feel comfortable doing this routinely and proactively.

The good news is that there are a number of organisations and initiatives to promote the involvement of patients in improving healthcare safety.

WHO Patients for Patient Safety

Patients for Patient Safety (PFPS) emphasises the central role of patients and consumers in improving the quality and safety of healthcare around the world. http://www.who.int/patientsafety/patients_for_patient/en/

Action against Medical Accidents

Action against Medical Accidents (AvMA) is an independent non-profit organisation that promotes better patient safety and justice for people affected by a medical accident. A ‘medical accident’ is where avoidable harm has been caused as a result of treatment or failure to treat appropriately. http://www.avma.org.uk/

Technology can help as well. We are learning how to design and deliver better healthcare, by looking at system designs, and hence are able to identify and eliminate steps where mistakes could occur. Information Technology has a very important role – and by having a unique identifier for every patient, and a single electronic health record, we can provide timely and accurate information to both patients and their doctors!

CONCLUSION

The delivery of the right information, at the right time, to the right patient, by the right doctors/nurses should no longer be left to chance; every patient should get this routinely as part of their care in the 21^st century. Sir Muir Gray, the Chief Knowledge Officer of the NHS inEngland, talks of good quality information provided directly to the patients being the way forward for the transformation of healthcare. In the recent reforms being proposed by the Government in the NHS in England, the Minister has made it clear that he wants a health service where patients are in the driving seat, not as passive recipients of care but as equal partners with healthcare professionals – ‘No decision about me, without me’ – and this cannot happen without huge doses of information therapy. Let us use the opportunities available to us to overcome the challenges and get the care that we all want for ourselves and for our dear ones.

Second Pre-conference Seminar: Using Information Therapy To Put Patients First in India

Invitation to

Second Pre-Conference Seminar@HELP on

Using Information Therapy to Put Patients First

on Saturday, 3rd September, 2011at 11.30a.m. at

HELP LIBRARY - Phone: 22061101, 22031133

Pls click here if you are unable to read this email:

Using Information Therapy to Put Patients First

Speaker	Topic
Dr.Taufiq Panjwani	A medical intern’s perspective on the application of Information Therapy.
Dr.Ninad Maniar	Information therapy and the medical student – a feasible symbiosis
Dr.Akanksha N.Thakkar	Using information therapy to effectively deal with neurodevelopmental disorder related childhood stress
Dr.Mihir Gangakhedkar	Information Therapy and Tackling Pandemics In Developing Nations

Health Education Library for People,
National Insurance Building, Gr Floor,
206, Dr.D.N.Road,
Mumbai - 400 001.
Tel Nos.65952393/ 65952394/22061101
www.helpforhealth.org
www.healthlibrary.com

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Patient as a Teacher for his Doctor

There is no doubt that the one person who will look after his own interests the best is the patient himself. You need to do your homework thoroughly, find out more about your problem, and then discuss the results of your research with your doctor. This is your right and your responsibility as well! Every honest doctor will agree that his patients are his best teachers!

When you play the Role of a Communicator

It is vitally important that you be open and honest with your doctor. When in doubt, ask questions, listen to the answers carefully and take notes. A prudent measure would be to write down your questions before your appointment, so that you do not forget important matters during the stress of consultation. Remember, the only stupid question is the one you don't ask! So, to re-emphasize, don't hesitate to ask questions! And if you don't understand the answers, the fault is not all yours; it could be that your doctor is not explaining the facts well!

Patient Community Meeting : Pre - Conference Seminar

Patient Community Meeting : Pre - Conference Seminar

The first pre-conference was held at HELP on 20th August, 2011.

Young doctors and medical students shared their thoughts on how Information Therapy will help patients and doctors to get better medical care.

Some interesting ideas presented by Dr.Shaivi, Dr.Soumil, Dr.Manasi and Dr.Amar were:

1. The problem is not too little but too much information - how should the patient sieve through all the information
2. Patients are not aware of resources at hand;
3. Support groups are found to be helpful; online support groups equally helpful;
4. What makes the patient happy - is sitting down and talking to the patient - they don't care if the doctor is better known or better qualified;
5. Convert patients from being passive to active
6. Group therapy works better than individual therapy
7. How can IT be used: every hospital should have
- all health information available for patients
- EMR for each patient to help patients and also for research for specific populations
- information should be easily accessible
- translated information
- online access to pharmacies to purchase/refill medicines
- easy communication with your doctor (email/sms)
- obviate need of human communication
- online services should be interactive
8. End Goal of Information Therapy should be Happy Patient ...... Happy Doctor + Staff
9. A website to put up reviews of doctors/services by patients.
10. Arrange the hospital sections to provide a single window to patients for all services including information therapy.
11. Dr.Amar working at Tata welcomed the idea of patient education center at all hospitals.

When you play the Role of a Financial Manager

Medical treatment can be very expensive these days, and you must make it a point to know the costs involved. Many patients are hesitant to talk to their doctor about money matters, but this reluctance can prove to be very costly! Also, if you are claiming reimbursement (either from an insurance company or from your employer) you must make sure that you have complete records of payments made along with their receipts.

When you play the Role of a Medical Record Keeper

You must keep all your records safely, and this can be very helpful especially if you have a complex problem a chronic disease, or need to change doctors or get a second opinion. File all your records in reverse chronological order; and number all your documents in sequences. Also prepare a one-page summary sheet of your medical experiences. Software packages are available nowadays, which help you document all medical details very efficiently.

When you play the Role of a Treatment Decision Maker

You will have to decide which treatment to choose among the alternatives. Sometimes the choices are straightforward, but sometimes they can be very confusing. A good doctor will offer you all the options and help you to decide, but ultimately, you have to exercise your right (and responsibility!) to select a course of treatment. You cannot afford to leave everything to god, or to the doctor either!

When you play the Role of a Medical Team Manager

You will have to find, evaluate, select, hire - and sometimes fire - members of your medical team. As an enlightened patient, you need to remember that you are the one in charge of your body --- and that it's your medical team you are managing!

INFORMATION THERAPY AND THE RTI ACT

2nd Annual Conference

Using Information to Put Patients First in India
Being afflicted with a serious disease is a difficult period for a patient. So when Mrs Shah was diagnosed with cancer, she wanted to know everything from her doctor. “Why do I need radiation?”, “Is there any alternative?”, “What are the possible side effects of such a treatment,” “What stage of cancer is this, and will I be completely cured?”, “What is the success ratio of radiation treatment?” were some of her queries. Years ago, such questions would not even occur in a patient’s mind, and he or she would trust her doctor blindly. Even worse, many doctors would not even bother to explain the treatment options to patients. However, today, just like the RTI Act has made government officials accountable and thus enhanced the relationship between the government and the public, information therapy helps to build a more transparent doctor-patient relationship.

The Right to Information (RTI) act has come as major breakthrough in good governance. It encourages transparency and inspires citizens to be more assertive about their rights, because bureaucrats are now more accountable to the public. Earlier, some government officials abused their power with impunity. They could easily manipulate the ‘rule book’ to suit themselves, as a result of which, ordinary citizens ( who were usually in the dark about their rights) were rendered helpless. However, with the advent of the RTI Act , citizens are now in a position to ask questions – and demand written answers ! The concerned official has no choice but to respond with the needed documentation. This has resulted in a healthy respect for the average citizen among officials and bureaucrats , who now think twice about hiding information from citizens.

If Information Therapy was similarly made compulsory, this would help to improve the doctor-patient relationship as well – after all, good doctors have always been happy to share information with their patients !

Unfortunately, some doctors still do not believe in leveling with their patients. This is why patients feel they are at their doctor’s mercy, and every word from their doctor’s mouth is treated as the gospel truth. When doctors had the upper hand and were used to making all the decisions, this resulted in a paternalistic style of practice. While this might have been advantageous in certain situations, it does not fit in with today’s times. Patients today want to play a more active role in making decisions that impact their lives. They do not like feeling handicapped as a result of incomplete and insufficient information. Good doctors understand the importance of having a well-informed patient and will do all they can in their capacity to provide information therapy. Some doctors may not be so proactive, and will require patients to ask for information before they dispense any. In the US, progressive health insurance companies are making it mandatory for doctors to keep patients in the loop about any risks or complications arising from their treatment, however small or insignificant. Even better, they are actually reimbursing doctors for dispensing information therapy, and this incentive is helping to create a win-win situation for everyone !

There is a great opportunity in India today for the IRDA ( Insurance Regulatory and Development Authority) to make the documentation of information therapy compulsory every time a patient claims for medical treatment expenses against his health insurance policy. This will ensure that patients are kept fully informed , and will also help the insurance company to reduce their expenses, as unnecessary surgery and overtreatment will be nipped in the bud.

Patients have the right to be thoroughly informed about their illnesses. Doctors who invest that extra effort in providing their patients with substantial doses of information therapy initiate a positive cycle , where there is transparency in the relationship. This helps foster confidence among patients , who feel that their doctors are interested in helping them get better, and that the relationship between them is not just a monetary one. Doctors also benefit from intelligent patients who ask questions ! Healthy discussions might reveal some issues that a doctor might have overlooked, which could have resulted in a poor outcome.

Empowering citizens with the RTI Act has helped to encourage them to take a proactive role in governance, thus helping to create a more vibrant democracy. Similarly, embedding Information Therapy within every medical encounter can also help to patients to take a more active and involved role in their healthcare – and this can make for happier patients – and happier doctors!

To register for the conference log on to: www.patientpower.in

When you play the Role of a Medical Information Researcher

The more knowledgeable you are about your problem and its treatment, the better are your chances of getting the right treatment. Educate yourself: you need to become an informed participant in your medical care in order to ask the right questions and to participate in making decisions about your treatment. This step will also help you to critically assess media reports about 'new breakthroughs in medical treatment', and whether these 'breakthroughs' are relevant to your problem or not.

Your role as a Patient

While you obviously have a vital interest in your medical treatment, unfortunately, you lack the specialized medical knowledge and skills to be able to take decisions in this context alone. This is why the concept of a team - which consists of you and your doctor, becomes very important. As a patient, your responsibilities are wide and varied. And you'll need to play several "roles" at various times.

Your Responsibility as a Patient

As a patient, you have to shoulder a wide variety of responsibilities, some of which are as follows:

1. You should provide your doctor with accurate and complete information about your medical history, past illnesses, allergies, hospitalizations and medications.
2. You should report changes in your condition (however minor they may seem to you) to your doctor - don't keep him in the dark!
3. If you do not understand what your doctor says or wants you to do, you should let him know without any hesitation!
4. You should strictly follow your doctor's treatment plan.
5. You should keep your appointments on schedule, and if you cannot do so for any reason, let your doctor know well in advance.
6. You should pay your medical bills promptly!
7. You should follow hospital rules and regulations without fail.
8. You should have realistic expectations of what the doctor can do for you. Everyone would like to get well completely, but one should always bear in mind that the doctor is not a miracle worker.
9. You should help your doctor to help you! If you cannot stick to a particular treatment plan, let your doctor know, so that he can formulate an alternative plan.
10. You should maintain good health habits.
11. You should participate actively in your medical care. Patients who are highly motivated get better faster: in other words, help your body to heal it!
12. You should ask questions to clarify any doubts or dispel any misconceptions in your mind. A doctor or nurse may not know when you're confused, uncertain or just want more information. Therefore, do not refrain from asking questions.
13. You should respect the doctors and the nurses. The medical staff deserves your respect and courtesy: treat them the way you would like to be treated by them!
14. You should not ask for false medical certificates or padded medical bills (in order to get additional reimbursement).

Lost in the health information maze?

Mrs Chopra. 45, was recently diagnosed with diabetes. Her doctor followed the standard protocol, prescribing her medicines, and advising her on diet and exercise. She was not content with the advice though. This was something that was affecting HER body, and she wanted to dig deeper for answers. She wanted to know how she could better take care of herself, and while she respected her doctor’s advice, she wanted more information that would set her confused mind to rest. She did what most patients in India and around the world would do – log on to the world wide web. A casual search for ‘Diabetes’ returned 268,000,000 results, with the first as always being Wikipedia, a helpful but often inaccurate portal. Mrs Chopra did not receive accurate, definitive information on her ailment, with different websites suggesting different measures to control diabetes. Frustrated, she simply stuck to her doctor’s advice. Whether she could have done do more for herself, she would never know.

Fifty years ago, the major problem was that patients had insufficient information. All the knowledge was locked up in medical books and journals, and this information asymmetry forced patients to put their doctors on a pedestal. Patients felt helpless, and they were unable to question their doctors due to their limited knowledge on medical matters. Today, there has been a sea change, but ironically, patients are still helpless! This is because they have access to too much information, a major chunk of which is wrong, inaccurate or outdated. Thanks to Google, patients can effortlessly unearth thousands of pages of information on any topic, but this information is poorly organised and is not put in context, which means that patients often find themselves at sea while surfing the web to find specific answers to their queries.

Why is too much information as dangerous as too little? This is because there is a marked difference between data, information, knowledge and wisdom! Moreover, there is no effective quality control when it comes to the internet which further aggravates the problem. It is common to find two different websites suggesting diametrically opposite things. This frustrates and confuses patients, and they wonder who to trust and why.

How can patients judge whether the information is reliable or not? There have been numerous initiatives to assist them in evaluating the sifting of information but, unfortunately, most patients are not equipped with sufficient knowledge to be able to differentiate between ‘good’ information and ‘bad’ information. The sad truth is that many commercial websites can be well-designed and attractive, but under that garb, the information they provide is completely false. Their primary agenda is to sell you something, and not to educate you, which means it is easy to be misled.

This is where Information Therapy comes in ! Information therapy is the prescription of the right information, to the right person, at the right time to help make a better health decision. Information therapy will both revolutionize the role of information in health care and enable patient-centered care.

What about the role of the government? While the UK and USA governments appear to be on track, the Indian government lags behind in providing the required confidence to patients. The NHS in the UK (www.nhs.uk) provides a comprehensive database for patients, assisting them in self-help. One can easily navigate through the myriad conditions and take the appropriate measures to treat their ailments. There are also links that inform you of the nearest hospitals, pharmacies, GPs, rehabilitation centres and the like. In the USA too, the FDA website (www.fda.gov) does a splendid job of informing and educating patients about the recent developments in healthcare. The section on ‘public health focus’ educates patients about the current trends in healthcare, often warning them of a potentially hazardous product or course of treatment. Moreover, patients in these countries are well aware of their rights, enabling them to make informed choices and adopt a no-nonsense approach to healthcare. In India, such an approach is seriously lacking, and patients are generally left to fend for themselves, relying on information on the web that could take them down the wrong path.

Patients need reliable information – a trusted guide who takes them through the healthcare information maze. Ideally, one’s personal doctor should assume this role, but sadly, most doctors cannot afford to spend so much time. So where do patients turn for help? High quality information can be provided by librarians, who are information specialists, and can help in separating the wheat from the chaff. Moreover, the positive aspect about relying on them is that they have no commercial interest in selling patients anything. The Medical Library Association of USA (www.mlanet.org) has taken phenomenal strides in this direction. It comprises 1,100 institutions and 3,600 individual members in the field of health sciences, all working to ensure that the best healthcare information is available to all.

There are also initiatives that provide quality seals to ensure that the information being provided to patients is reliable and of topnotch quality. An example of this is the Health on the Net Foundation (www.hon.ch). Health insurance companies in the USA such as United Healthcare and Aetna ( website url) invested a lot of time and energy in educating their patients, and it makes business sense for them to produce high quality information for their clients, as prevention is far better than cure. However, Indian companies are still lagging behind and have a long way to go before they can catch up!

To fill this gap in India, HELP has partnered with , Healthwiseto use the latest technology to empower patients. The sole mission of the Healthwise Knowledgebase is to empower patients with Information Therapy! Healthwise helps patients make better healthcare decisions by

1.Promoting self care and helping them to do as much for themselves as possible.
2.Providing them with evidence-based guidelines, so that they can ask for the right medical treatment that they need – no more and no less.
3.Equipping them with veto power, so they can say ‘No’ to medical care when they don’t need it, thus preventing overtesting and unnecessary surgery.
The Healthwise Knowledgebase (www.informationtherapy.in) is a free database that acts as a virtual guide, enlightening patients on their ailments, so they can take the right path to healthcare. One can also log on to the Health Education Library for People website (www.healthlibrary.com) where one can ask any question about a particular ailment

What of the future ? With advances in telemedicine and internet penetration and speed, it’s possible that the web will allow patients to access an online virtual doctor with impeccable bedside manners, who can guide and reassure patients , enabling them to take informed choices about their health!