Ram Khare, a security guard in a Mumbai suburban society, visits a doctor for his chronic cough, which is diagnosed as ‘bronchitis’. His doctor gives him medicines along with printed material on how bronchitis can be managed effectively. This handout is in three languages – English, Hindi, and Marathi. However, that doesn’t solve the issue. Ram Khare can’t read or write. How does Information Therapy come to the rescue here?

“Effective patient education ensures that patients have sufficient information and understanding to make informed decisions regarding their care.”
American Academy of Family Physicians’ Guidelines for Patient Education

In order for Information Therapy to be effective, the patient education materials used must be both accessible and understandable. Whenever I pose a simple question to doctors about their approach towards patient education and what tools they use for this purpose, their knee-jerk response is – ‘We use print material’. Printed material indeed is one of the most commonly used forms of patient education worldwide. They are either in the form of typical handouts given to patients by healthcare professionals or can be accessed via various health websites. These materials are and always will continue to be one of the most cost-effective methods of patient education for the masses. I am not contesting the efficacy of printed material but I am sure that this not always the best solution in poor countries where health illiteracy is so widespread, and where many health education materials are difficult to understand. This is especially true in India which is many countries within a country! As a result, we miss out on harnessing the power of patient education. Hence it is important to apply a patient-centered approach to developing patient educational material.

As a company involved in developing effective patient education material, we have come across various challenges and situations which have helped us create some simple yet effective ways of delivering patient education material using various media. High-quality patient education material respects the principles of adult learning and should be able to:

· Adapt teaching to the patient’s level of readiness, past experience, cultural beliefs and understanding
· Create an environment conducive to learning with trust, respect and acceptance
· Involve patients throughout the learning process by encouraging them to establish their own goals and evaluate their own progress
· Provide motivation by presenting material relevant to the patient’s needs
· Provide opportunities for patients to demonstrate their understanding of information and to practice skillsBarriers in creating patient education material

To overcome the communication barriers created by poor health literacy, it is important to put the patient first when developing educational materials. In India, patient education is still a comparatively new field. While designing engaging patient education material, we come across various issues, practical problems and challenges. The most important of these problems are:
· Financial considerations
· Misconceptions about disease and treatment
· Low literacy and comprehension skills
· Fear of doctors
· Language barriers
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· Negative past experiences with doctors
· Denial of personal responsibility and a sense of fatalism

Over time, we have been able to build a team of doctors, artists and digital graphic specialists. We can tap into our experience and expertise in this niche area, to produce a wide variety of materials which are adapted to Indian conditions. We have made a conscious decision to use the animated format. This is universally understood; so that we do not have to reinvent the wheel every time we create new content.

We now have a library for over 150 hours of unique content; and given the fact that skilled computer professionals charge much lesser for their time in India, we can produce high-quality graphic digital patient educational materials for Information Therapy at a fraction of what it would cost in the western countries. Since we are addressing a neglected market, but are using high-tech tools to do so inexpensively, we feel the future is very bright.

Elements of successful patient education

- Interactivity
§ Educational materials should be engaging and leave an impact on the patient’s mind, thus increasing patient confidence and fostering fast recovery
§ Ease of access and navigation also forms a key feature of patient education programs, thus facilitating easy understanding of the health care plan
§ It should help the patient to develop a positive approach towards his/her health-related problems and not scare him
§ It should help to dispel common myths and misconceptions

- Language
Verbal communication between patient and doctor should ideally be in the same language. But in a country like India, it is impossible for a doctor to know all the regional languages and dialects. A knowledge-rich patient education material dubbed in multiple regional languages can solve this problem for doctors.

- Cultural beliefs
Culture affects how people communicate, understand, and respond to health information. To produce positive health outcomes, it is important for health organizations and doctors to recognize the local cultural beliefs, values, attitudes, traditions, language preferences, and health practices. This means that it’s often necessary to customise patient education materials for local needs. The use of modern digital media allows us to do this easily!

- Infrastructure requirement
Multimedia patient education materials can be used with a wide variety of devices. The good news is that many doctors own smartphones which can be easily used to facilitate one-on-one dialogue with the patient. Print materials should be placed where they can be accessed easily and the visuals are not distorted.

Types and tools to deliver patient education material

- Oral Communication
Communicating one-to-one with the patient is and always will be the cornerstone of effective patient education. In today’s scenario, it is very important the doctor spends enough time answering all of the patients’ queries. Quality is more important than quantity.

- Print
As I mentioned earlier, print material is the most economical and effective way of teaching patients. It is always good to give patients written explanations of their conditions and treatments. One should always look out for materials containing trusted content but at the same time make sure the materials are suitable for everyone. When choosing printed materials, one should remember that the layout and graphics play an important role. We have used a wide variety of printed materials, including:
§ Handouts
§ Leaflets
§ Posters
§ Flashcards
§ Pop-up books
§ Comic books
§ Illustrated books

- Multimedia material
Video and other multimedia presentations are more effective than traditional printed patient education methods in increasing short-term retention of information. However, they should be used as a supplemental part of the patient education process. Even the most well-produced multimedia patient education material will not be effective if there is no window to discuss the content with the doctor.

§ Since multimedia uses visuals and graphics, it helps overcome language barriers. The new clever touch screens are very user friendly, and allow even illiterate patients to assimilate information efficiently !
§ A doctor may sometimes forget to provide some information about a condition/procedure during a consultation, but multimedia content is always consistent
§ Multimedia material is a better choice than print when patients have low literacy levels.
§ One major advantage of video is that it’s possible for the doctor to document that the patient was adequately educated and the consent which the patient gave for the treatment was truly informed consent. This can help in risk management!

A major advantage of modern audiovisual media is that it is all produced in a digital format. This means that it can be delivered through a wide variety of channels and platforms, to a large number of devices, including TVs, PCs, and smartphones. This means that it’s possible to deliver the content inexpensively, no matter where the patient is – whether he is in a hospital bed or in a small village.

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 inIndia: 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!

My patients, Mr and Mrs Gupta, are sitting in the waiting lounge of my clinic, awaiting their turn. The usual gamut of magazines is in front of them. But do these serve any purpose? Instead, my receptionist gives them a comic book about IVF, so they can learn more about their treatment options. This puts them in a better frame of mind, and many of their doubts get resolved even before they come in. The beauty of Information Therapy is that it can be used in many innovative ways !

I am an IVF doctor and I put my heart and soul into treating my patients. IVF is often the last resort for infertile couples, and, understandably, these couples will have countless questions about IVF. This is an expensive treatment, and they are investing immense time, hope and energy in building their family. Since the outcome of IVF is always uncertain, they have a lot of doubts and misgivings. These are still many myths and misconceptions surrounding IVF, and many women are worried that IVF babies are ‘weak’; or that all IVF pregnancies are multiples; or that the hormonal injections taken for IVF will make them fat or cause them to develop ovarian cancer in the future. Moreover, infertility often impacts the entire family (and not just the couple), and many decisions about medical treatment are made in consultation with many family members.

I proactively use Information Therapy to clear doubts and answer questions. This helps ensure that everyone is on the same page. Since I provide this information, patients are reassured that I am open and transparent. They know they are in safe hands, because they can see that I am well informed and knowledgeable. The fact that I am an expert in my field makes them put their faith in me.

Information Therapy needs to be embedded in clinical workflow, and we start providing Information Therapy well before the patients come to us for a consultation. We do this online, using many channels, including our website ( www.drmalpani.com) ; videos on youtube (http://www.youtube.com/user/aniruddhamalpani)  ; and social media, including twitter (http://twitter.com/#!/drmalpani) and facebook
( www.facebook.com/Dr.Malpani) .

Web-based information prescriptions have major advantages:

 (1) I can update the information quickly and easily.

(2) The information is accessible to all my patients around the world. Using Google translate, patients can read it many different languages!

 (3) The information can be presented in an interactive and engaging manner through the use of animation and videos ( www.ivfindia.com) .

(4) Delivering the information does not cost me anything.

(5) Patients can absorb and review the information at their own pace – and for free!

Isn’t all this expensive? Who has the time to do all this? Yes, it is expensive and time-consuming, but the beauty is that once you have done it, you can use it many times, for many patients, and over many years! ‘Create once, use multiple times’ is a very cost effective proposition. Updating and maintaining content is much easier once you are familiar with the process.

Even better, you can get your patients to contribute to your online resources. For example, we have a section called Success Stories (http://www.drmalpani.com/ivfsuccessstories.htm). We request our patients to write about their infertility story and their experiences at Malpani Infertility Clinic and then upload this to our website. This first person account helps other infertile couples when they are making decisions regarding their treatment, as they are getting information from someone who has been there, done that! We also encourage our patients to act as email buddies, to help other infertile couples in distress. I always remind my patients that helping others is a great way of helping yourself.

The Internet has become an important source of health and medical information. However, a significant amount of health-related information on the Web is inaccurate, unreliable or untrustworthy. By creating our own content, we can direct patients to information that is of high quality, appropriate to their condition, and consistent with our approach to treatment. This helps them to save time and stops them from getting confused or misled. Patients still depend on doctors to provide the most credible answers to their health questions!

In addition to providing Information Therapy online, we also provide it in the real world. When patients come to the clinic for a consultation, we give them with an IVF comic book while they are waiting for an appointment. Thanks to such Information Therapy, my consultations have become much easier. I do not have to waste time going over the basics and can focus quickly on the patient’s key concerns. The fact that I am an author reinforces their confidence in my professional competence and helps to reassure them that they are in safe hands. Doctor shopping is a fact of life in today’s world, and since we provide this information proactively, our patients prefer coming to us, because they can see that we are open and transparent.

All our educational materials help to ensure that patients have realistic expectations of their treatment. While it is true that our success rates are excellent, it is also a fact that the outcome of any IVF cycle is always uncertain, and patients need to be prepared for failure. Reading about this in black and white helps them to understand the limitations of our technology.

Patients often forget a great deal of what is told to them. This is why we give them a DVD to take home, which they can review at leisure – often with other family members. This helps to reinforce my message, and it also ensures that we stand out amongst the other IVF doctors that they have visited. During and after the IVF treatment, we encourage patients to remain in touch by email. I find this a very efficient way of answering questions. This way we don’t have to play telephone tag – and since everything is in writing, patients don’t get confused or forget things! We also have a FAQs page on our website, while helps us to proactively reassure patients and put their doubts to rest.

We know that different patients have different learning styles, which is why we use myriad tools to deliver Information Therapy. On our site at www.ivfindia.com, we have developed a wide variety of educational tools, including e-learning courses, animated cartoon films, games, and you tube movies. Providing this kind of Information Therapy has helped me to become a better doctor.  It ensures that I look at the world through my patient’s eyes, so it is easier for me to be empathetic. Also, because we help patients to have realistic expectations, they don’t get emotionally shattered if the cycle fails and they are able to cope better with the IVF emotional roller coaster !

Dr Aniruddha Malpani, MD

Not too long ago, most doctors in India were unaware of the concept of an email address! This maybe hard to believe , but it’s true !  However, times have changed dramatically, and today most doctors use email regularly. But even that is not enough. If you are a doctor, you need to have a personal website. This rapid pace of change is symbolic of how quickly things are changing in today’s world.  In fact, it is my contention that doctors in private practice in India can no longer afford to not have their own website. Just like how you need a telephone line to practice medicine, a website has become an integral part of modern medical practice – and doctors who are not proactive are likely to get left behind!

The key to your success is your ability to keep your patients happy and to provide them with excellent medical care and your website lets you provide many value-added services for your patients. It can provide basic details such as:

• the timings of your clinic;
• directions as to how to get to your clinic;
• information on the specialized services you offer;
• why you are better than other doctors;
• answers to patients’ commonly asked questions ( FAQs) ; and
• post-procedure instructions .

This means you can use your website to serve your patients round the clock without requiring them to call or visit, making your website a valuable support centre. Your website allows you to answer your patient’s queries by email. Patients will always be curious about their ailments, and many will use the internet to find information. Please do not underestimate your patient’s intelligence. Many will spend hours hunting for information, in order to help themselves get better. If they do not have a computer, they can go to the cybercafé.  Even illiterate patients do have relatives who can conduct internet searches for them!  However, most patients would much rather get information from their own doctor, and if you provide this information on your website, your patients know they can trust it.

Most doctors have now started seeing patients coming with internet printouts of pages and pages of unreliable and irrelevant information. If you put up your own website, you can guide your patients towards reliable sources of information, thus saving your patients the frustration of wading through endless pages of garbage and misinformation! Remember that Indian patients want information about diseases common in India – so they want information on malaria rather than cystic fibrosis. By providing this information, you establish yourself as a credible expert. You can refer patients to your website at the end of the consultation, so they can educate themselves. Patients appreciate this – and word of mouth will help you get more patients.

This is actually a huge opportunity for forward-thinking Indian doctors. There is very little content about health and medicine in Indian regional languages today. Any doctor who is willing to take the time and trouble to set up a website and provide this content in his local language is likely to become a star very soon. This will take some work initially, but this is an investment from which you can reap enormous returns in a short time. Internet penetration in India is increasing by leaps and bounds and Indians have easier access to a mobile phone today than they have to a toilet!

The good news is that it has become very easy to publish in Indian local languages, and because you can use Indian companies to do so, the cost of publishing a website is a fraction of what it would be in the USA. Play to your strengths and make the most of these great opportunities to achieve instant global presence!
Your website can help you to attract new patients. Indian medical care is very cost-effective, and a website is valuable for informing NRIs of your medical expertise. Soon, it will become a routine for patients in India to research about their doctors, as it is in the USA, and your website can help patients to find you. At our website, http://www.DrMalpani.com, we answer over 20 queries a day, as a result of which we get direct patient referrals from all over the world. Remember that internet savvy patients may be slightly different from your average patient. They are well-informed, used to getting second opinions, and can be quite demanding. Most are affluent and know exactly what they want, so they will keep you on your toes!

It is very hard for patients to trust someone they have never seen or met and this is why it is so important that your website should be information-rich and full of content which patients will find of value. If patients understand that you are interested in empowering them with information, they are much more likely to trust you. The more you give away, by being generous with your knowledge and sharing it, the more you will get in return.

Even though many doctors today understand the importance of having their own website, they often fall victim to procrastination, and do nothing concrete about this. Others are worried that setting up a website is expensive, while some do not know who to contact since many web designers do not have the technical expertise to publish medical websites. In order to address this problem, Plus91 (www.plus91.in), in which I am an angel investor, offers customised websites for doctors, tailored to individual preferences, for as little as Rs 10,000 per year – and they can publish this so that your website is live within just 2 days. You can see what your website will look like at www.websitefordoctors.in.

Ideally, all doctors and clinics should have their own websites, where their patients can find reliable updated information on their health problems. Your website will showcase your talent, and help you grow your practice ethically, so you do not have to worry about giving cuts and kickbacks. This will help your patients as well, who will become aware of the latest medical facilities you offer. The transparency that the web imposes will help to improve your relationship with your patients, by allowing much more open communication between them and you.  While it may seem that email is impersonal, the truth is that patients can be far more communicative by email than they are face to face because they do not have to worry about how many other patients are waiting, and can pour out their hearts to you! Interacting with your patients online will help you to become more patient-centric and empathetic, because you will get a much better idea of what your patients are thinking about and what they want. It will save you time as well, since once you upload answers to common queries as FAQs, your patients will not feel the need to ask you the same questions repeatedly.

Once you have your own website, you can start exploring social media ( Web 2.0) to reach out proactively to your patients. Tools such as Facebook and Twitter are very useful in projecting yourself as an authority – make the most of them !

You need to have realistic expectations of what your website can do for you.  In India, the number of internet users is not yet as high as in the USA, so don’t expect patients to start pouring in the day your website goes live! Just having a website is not enough – remember that there are over a million websites out there. You need to promote your website actively. Print your website address (URL) on your business cards and your stationery and display it in your waiting room. Encourage patients to visit your website – most will be happy to follow their doctor’s orders! And if your website has content which is useful to them, and which is updated on a regular basis, many will happily visit it regularly and even refer many of their friends to your site as well.

You can also design a monthly ezine, to keep patients coming back to your site. Your staff should constantly be on the lookout for interesting pieces for the next month’s issue. This creates a direct link to your website, but does require commitment to keep the content fresh. You can employ a webmaster to do this for you, to ensure you do a good job. Your website is an image of your clinic so make sure you do a professional job.  Also, ensure that you reply promptly to queries and emails. It’s a good idea to check out competing websites, so you can see what they are doing, but don’t blindly copy their content.  Your website can help to keep you on your toes both professionally, since you need to update your medical knowledge to provide fresh content for your website and to answer queries received by email from patients in all parts of the world, which means this is a great method of Continuing Medical Education (CME); and technologically, since you will need to keep abreast of computer and internet technology. A website is valuable even for doctors in rural areas, who are often cut off from the rest of the world. This is a useful way of keeping in touch and contributing to the medical knowledgebase.

Some doctors are worried that having their own website may be misconstrued as a form of advertising. However, the internet is a very valuable means of educating patients, and doctors need to be in the forefront of providing reliable information to their patients. After all, if we do not take the responsibility for educating patients, then who will? The future of medical care is e-healthcare, with the promise of online medical records, online pharmacies, telemedicine, patient education, and an ever-expanding list of exciting opportunities. The opportunity to help our patients navigate the wealth of information on the World Wide Web and better educate themselves is now in our hands. We owe it to ourselves and to our patients. As a doctor, if you do not rise to this challenge, your friendly competitor down the road will do so and take away all your patients!

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

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.

Doctors need Information Therapy too ! The doctor’s major asset is his professional knowledgebase. As medical science progresses, doctors need to keep up with current trends. Medical textbooks get outdated very quickly – and new editions and medical journals can be very expensive ! Sadly, most doctors today are dependent on medical representatives to learn more about advances in therapeutics – and reps are not always the most reliable source of information.

This is why the Medical Council of India ( MCI) has made continuing medical education ( CME) compulsory for doctors. The hope is that by making this mandatory, doctors will invest in educating themselves, so that they remain uptodate with the latest medical advances, helping them to provide state of the art medical care for their patients.

The only form of CME credits which the Indian Medical Council recognises is attendance at a medical conference. This medical conference has to be approved by the Council ( presumably based on the quality of the content provided for the participants) ; and doctors who attend approved conferences get a certain number of credits for their attendance. Doctors need to prove that they have accumulated a certain number of credits every year if they want to renew their registration.

The biggest problem is that in real life, medical conferences are terrible tools for teaching doctors ! Lectures are the most inefficient form of transferring information !

Have you ever attended a medical conference ? Half the audience is outside in the hallways, chatting , collecting freebies at the stall, and eating. Most are fast asleep once the lights are dimmed; while others doctors go out shopping or sight-seeing once lunch is over . Few speakers have the eloquence and presentation skills to grip their audience because and most speakers are selected based on a quid pro quo basis – ” If you invite me as a speaker for your conference , I’ll invite you for mine . This is why most conferences have the same speakers talking on the same topics. Most presentations are boring and poorly prepared. They often contain outdated information, prepared at the last minute by a junior resident, who has copy and pasted stuff from the web. The speaker then reads out the text on the slides – and tries to show off his erudition . The only reason doctors can get away with this is because few doctors in the audience are listening – and most doctors know even less than what the speaker does ! This is why the “learning” which doctors get from conferences evaporates so quickly !

The reality is that these conferences represent a waste of a lot of precious time and money ! Can we really afford to waste the doctor’s precious time like this ?

We need better tools to ensure that doctors remain uptodate. If doctors become outdated, they end up losing their patients to well-equipped specialists in corporate hospitals. This can also be embarrassing , when patients with internet printouts know more about their disease than they do ! Also, this failure to update themselves with the latest medical knowledge can result is lawsuits for medical negligence – the doctor’s biggest nightmare. This is why when  doctors are stumped by difficult patients  they refer them to a specialist or expert, who then helps them to learn more about the management of that particular problem. However , this kind of learning is very episodic and opportunistic – and not all consultants are good at educating family physicians !

It’s not that doctors want to become outdated or that they don’t want to remain updated. The reality is that, in a busy practice , when doctors spend all their time taking care of their patients, it’s very hard to keep up.

The trick is to deliver Information Therapy to the doctor “ just in time” – exactly at the time he needs it. This means the best way of providing it is when he is actually seeing the patient who presents with a perplexing clinic problem, which he is not sure how to solve.

 Today, the vast majority of doctors have easy access to the internet – either through a PC, laptop or their smartphone. This is why many will turn to the internet to keep updated. While there are some good online free resources, the sad truth is there is very little high quality free medical information available on the net ! Much of it is patchy and unreliable.

The good news is that now for less than Rs 30 per day, Indian doctors can subscribe to the world’s largest online medical library, at www.mdconsult.com ! MDConsult allows doctors to remain uptodate by providing online instant access to the FULL-TEXT of over 40 respected medical books and 50 prestigious medical journals which are constantly updated. This means they will never need to buy another medical book in your life ! MDConsult provides convenience and peace of mind – at the doctor’s desktop – for only Rs 9995 per year ! This is a highly discounted price for Indian doctors only .

MDConsult is the world’s largest online medical library. You can take a free tour at http://info.mdconsult.com/tour/

However, Information Therapy for doctors does not just consist of learning from medical books and journals. It’s equally important for them to learn to see things from a patient’s perspective ! How patients can help provide Information Therapy for doctors is the subject for the next chapter.

What patients can contribute to Information Therapy

Doctor Sourav Bose was finding it difficult to manage Mr Aditya Rao’s diabetes. Though he had changed the dose of the insulin thrice, his blood sugars remained high. He was at his wit’s end and did not know what to do. He put it down to “non-compliance” and wrote Aditya off as a “ difficult
patient “ ! He failed to recognize that by spending more time with his patient, delving into his lifestyle, and asking him why he was having a hard time with following the treatment plan, he could have come up with an effective solution. Aditya was as much to blame ! He should have discussed the practical difficulties he was facing with taking the insulin injections in his office, as advised by the doctor, instead of meekly accepting his doctor’s advise – and then failing to follow it !  

Information Therapy traditionally means the prescription of the right information to the right person at the right time to help make a better health decision. However, if we accept the fact that patients are at the center of the medical universe and that it is patients who are the true experts on their illness, then an equally important part of information Therapy should be the provision of information from the patient to the doctor! After all, communication is a two-way street and the patient’s personal perspective is as important as the medical perspective through which the doctor views the world.

Why has this been neglected so far? Why don’t more patients provide Information Therapy to their doctors? This kind of patient education has a long and respected history! While writers have written on what it is like to be a patient for hundreds of years, one of the most important books that taught doctors to re-look at things from the patient’s perspective was Norman Cousin’s classic, Anatomy of an Illness. In fact, there is now an entire a genre of books that does this very well. This is called pathography – a narrative that gives a voice and face to the illness experience, by bringing the person behind the disease to the forefront!

Pathography is a very useful teaching tool! It helps doctors to learn empathy, so they can learn to see things from the patient’s perspective. For example, though I am an IVF specialist, I am not infertile myself. By reading first person accounts of the trials and tribulations faced by infertile couples, I learn a lot about the problems that my patients face – problems that they may not be willing to talk about when they meet me for the first time. All doctors learn medicine from their patients. As Sir William Osler said, ‘He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.’ Unsurprisingly, his best-known saying was ‘Listen to your patient, he is telling you the diagnosis,’ which aptly emphasizes how much a good doctor can learn from a patient!

Doctors usually remember their most challenging patients or their most complex and difficult cases all their life – these often form the defining moments in their professional career. It is true that these exceptional patients teach us a lot and good doctors treasure them, since they learn the most from them. These are a doctor’s ‘memorable’ patients – many of whom teach us what not to do ! Intelligent doctors learn from their patients all the time, but this can only happen if patients are willing to teach them! These are the ‘expert patients’ – those who are articulate and treat their doctors as partners in their medical care.

Doctors can learn from every patient, but only if patients learn to speak up, and doctors learn to listen. It is not that doctors are going to learn medical facts from each patient – but each patient is unique and has valuable insights to offer. Patient feedback helps doctors to improve their services, and even complaints are gifts, when taken in the right spirit! Unfortunately, there are still many barriers to getting feedback from patients. Most patients are inhibited and scared and do not have the courage to displease their doctor by telling him the unpleasant truth. If patients want their doctors to do a better job, they need to learn to speak up. Most dissatisfied patients today just walk out of the doctor’s clinic and never return. They find a better doctor – but by failing to give the doctor honest feedback, they lose the opportunity to help him improve and do a better job with his next patient. Similarly, most doctors are too busy to ask for feedback, and most continue deluding themselves that they do a perfect job with every patient!

Hopefully, the Internet will allow patients to offer critiques and criticism more easily. There are now many doctor-rating websites, where patients are encouraged to provide their opinion about their doctor. This kind of patient-generated content will help doctors to get their act together, if they are willing to keep an open mind and try to correct problems. Thanks to the Web, smart patients have adopted a number of clever initiatives towards improving medical care. These e-patients, of whom the most prominent is Dave, are speaking up and claiming their rightful place in the healthcare ecosystem, so that patients now have a voice which is heard, and more importantly, respected.

Online patient support groups have a lot of clout – and crowdsourcing the collective experiences of hundreds of patients can actually help advance medical research, as proven by innovative sites such as PatientsLikeMe (www.patientslikeme.com). Patients are also collaborating to fund clinical studies, so that doctors can do research on topics that are of interest to patients , and not just on areas which pharmaceutical companies find remunerative . Patients have also taken a lead role in simplifying medical research so that it becomes understandable to other patients. Cochrane Collaboration (www.cochrane.org) is a fine example of how it is important for researchers, providers, practitioners, and patients to collaborate. 28,000 people from over 100 countries work together to help healthcare providers, policy makers, and patients make informed decisions about healthcare. Such collaboration is imperative in today’s times.  When individual knowledge turns into collective knowledge, medical care is substantially enhanced!

CRM ( customer relation management ) is a tool which all service industries to keep their customers happy. While one would expect hospitals to use CRM routinely, unfortunately, most hospitals still do not bother. Given the large patient:hospital bed ratio in India, most hospitals continue to take the approach that patients do not have a choice as to where they can go for their treatment, which is why most hospital staff adopt a high-handed attitude towards patients . Stories of hospital staff rudeness and arrogance are innumerable – and this is reflected in the increasing number of incidents of violence against doctors and hospitals.

Progressive hospitals are willing to learn lessons from the hospitality industry , and are willing to implement CRM to help their patients have a better experience when they come to the hospital. However, when I am talking about PRM, I am referring not to Patient Relationship Management ( something which all hospitals need to learn to do, but most still do badly !), but rather to Patient Relative Management.

The need for this is much more acute in Indian hospitals ! When most patients come to a hospital in India, they are accompanied by a bevy of friends, neighbours and relatives ! These people are extremely important in India, but sadly, they are often ignored and neglected by the hospital staff and management. Most hospital staff members consider them to be a nuisance and tolerate relatives as a necessary evil – and there are very few amenities available for family members , even for those who are on a 24-hour vigil outside the ICUs !

This is a very short-sighted approach ! Relatives are understandably concerned and worried about their patient’s health. They are key decision makers, and need to be educated and informed about what to expect. They need to be addressed politely and kept updated about the clinical status of their patient.

Unfortunately, this is rarely done. Doctors ( and sometimes, the more senior they are, the worse their habits !) seem to take a perverse pride in making relatives wait for ever and ever ( often for completely flimsy reasons). They are not willing to share information about what goes on behind the intimidating doors of the Operation Theater and ICU. This is why family members often get angry with doctors, and when their patient dies, are eager to vent their frustration by burning down the hospital or beating up the doctors.

Doctors are very busy – and many may not have enough time to talk to even their patients, leave alone their relatives ! This lack of communication can cause frustration; and after bottling it up, relatives will often vent their resentment when a mishap occurs – even if the doctor was not to blame.

This is a systemic problem, which can be addresses proactively by the hospital management. In order to protect doctors, who are now feeling very vulnerable, the government is passing laws and hospitals are beefing up their security. However, this is a very short-sighted fix.

It’s far more important that hospitals start investing time, money and energy in educating patient’s relatives, so they have realistic expectations of the outcome of the medical treatment.
Dissatisfaction arises when there is a mismatch between expectations and reality – and helping relatives to have realistic expectations will help in reducing dissatisfaction with doctors and hospitals !

The most effective way of doing so is by setting up Patient Education Resource Centers in the hospital. The PERC will be run by nurses and librarians; and will help to educate patients and their relatives, so they know what to expect during their hospital stay.

As Indian hospitals strive to attract medical tourists and match global standards ( for example, by getting JCAHO accreditaion), documenting that patient education has been provided is going to be an integral part of patient care. The PERC will become an important department of the hospital . In the Mayo Clinic, the Dept of Patient Education occupies an entire building !

Not only are PERCs important for risk management, they are also very cost effective. All these relatives are prospective future customers for the hospital ( after all, we are all going to fall ill some day !) If they are treated with respect, they are likely to come back to the same hospital for their own medical care when they need this !

We all know that the best kind of marketing is word of mouth marketing . Instead of wasting money on advertising in the press , it makes much more sense for hospitals to invest it in PRM ! Relatives ( and the patient’s visitors ) are potentially a captive customer base – why not educate them about health and illness ? In a hospital, everyone has a much more heightened sense of their own mortality. When you visit a friend who is sick, you are much more acutely aware of your own frailty – and much more health conscious ! ( What can I do to make sure my husband does not get a heart attack like his elder brother did ?) Reaching out to these relatives through a Patient Education Resource Center to help them learn more about their health can pay big dividends for the hospital , because they are much more likely to seek medical assistance in a hospital which has taken the time and trouble to educate them !

PERCs can also be very useful for educating and training paramedical staff. The hospital support staff
( such as ward boys and the janitorial staff) play a very important role in serving the patient’s daily needs. However, they are often not very well informed about hospital procedures . The PERC can be used to educate and train them, so they are more responsive to the patient’s special needs .

Vandana Gupta

Founder V Care

“YOU HAVE HODGKINS LYMPHOMA. WE WILL TREAT YOU”.

There was a stunned silence. All I could comprehend was that I had something serious. I knew nothing more and the doctor did not have time to explain anything more. So my husband and I were forced to go to look for more information in a medical encyclopedia.( Remember that GOOGLE did not exist 18 years ago ! )

Reading about Hodgkins gave us more insight. Now we knew it was a type of Cancer , and we were in a state of shock. The next day we met the doctor in a crowded room at a leading hospital in Mumbai. In barely five minutes , I was shooed out of the room with a prescription in my hand and instructions to go to the day Care center to start my 　Chemotherapy.

In one day I had learnt so many different words—Hodgkins Lymphoma, Day Care, Chemotherapy without understanding the meaning of 　anything . My husband made the “mistake” of asking the doctor for some information. We were promptly handed a medical journal article which was published to teach doctors how to handle the side effects and complications of the medicines which were going to be administered to me. This was the worst possible thing which could have happened. The doctor was trying to be helpful, but after reading the article ( which was full of statistics and complex technical terms we could not understand), both of us started wondering why treatment was being 　prescribed at all ; and if it was even worth taking the treatment , as the chemotherapy would cause all the organs to fail anyways !

How I wished that the professional, the doctor whom I trusted, had prescribed some information along with the diagnosis and the medicines. I would have been empowered and the starting point of this empowerment would have come from my doctor who was going to handle my life for at least the next six months !

In retrospect , I can now forgive the doctor. I guess he was complying with our request and trying to “arm ” us with information, but he forgot that the information which the doctor provides needs to be tailored to the patient’s needs . Otherwise, the information can actually be harmful ! Sadly, the doctor did not have access to patient educational materials – and may not even have known that they existed !

Two days later, in the middle of the night , I got a phone call from my uncle (he lives in Leeds , hence the midnight call) congratulating me. I asked him what was there to congratulate and he said “If you had to have cancer you have the best one”. However, in my mind, the information that I had cancer and the word congratulations did not go hand in hand !!!

The one good thing that happened as a result of this lack of information was the birth of the V Care Foundation . I started this after completing my treatment , and my goal was simple – to provide information to patients in terms they could understand. Having suffered the results of an information famine during my treatment, I wanted to do my best to make sure that other cancer patients did not go through the same experience purely because of the absence of doctor- prescribed information therapy !

Doctors and patients seem to come from completely different worlds, especially in India ! Doctors usually are highly privileged, affluential upper class professionals, who think and read and write in English. Patients, on the other hand, come from all strata – and many are illiterate; can only understand their regional language ; poor ; and have limited ability to read, write and understand !

Given these constraints, it’s not sensible for us to blindly adopt the US model for providing Information Therapy – this would never work in India. This is both a challenge – and an opportunity. Indian doctors and patients are smart, and working together, I am sure we can come up with clever inexpensive solutions, tailored for India !

The information therapy movement has to make information universally available – and ensure that it’s tested on real patients, so we know that it does effective serve their needs. Different patients have different learning styles – some people process written material easily , while others need visual information or interactive communication. Multiple approaches will help in making sure Information therapy reaches out to everyone.

The diagnosis of cancer – a life threatening disease – sends patients ( and their family-members ) into a state of shock. The first information that he needs to be made familiar with is the hospital procedures – for example, the implications of being registered in a particular type of category (free, general, private etc.) 　The patient should be informed of the various tests that would be required , and a general time frame in which they need to be done . Every centre should have patient support groups , and information about these groups should be routinely shared with patients . Medical treatment can be very expensive; and ideas about the cost ( and sources of financial assistance); along with the need for blood , long stay facilities ; and the available treatment options, such as chemotherapy, radiation and surgery 　, and the role they play in treatment can be provided in a non-threatening environment . It may not be the doctor’s job to do all this – and in fact, it’s not a sensible use of the doctor’s time to even ask him to do this. But it is the doctor’s job to make sure his patient has easy access to all this key information ! With this kind of guidance , the patient and his caregivers are prepared for what to expect ; and their involvement with the treatment starts from the first day. It also builds a good reputation for the hospital, as it shows that the hospital really cares. Even today, we interact with patients who had come from the village, and were expecting to return home in a few days .They were never told that treatment for cancer could 　go on for a couple of months !

Equipped with the information, the patient is now better prepared to meet his doctor. The doctor is happier to interact with a knowledgeable patient – it makes his life much easier if he does not have to spend his precious time explaining the basis over and over again to each patient !

Once the diagnosis is known , then the patient would like more information before his treatment starts. The biology of the cancer he has can be explained, and what the treatment options are. He needs to be told what to expect; what the side effects are; what the success rate of the treatment is ; what the survival statistics and prognosis are; and what can be done if things don’t go according to plan. The practice of providing information 　　proactively to patients will help them to contribute to their personal healing.

Engaging the patient is powerful medicine ! Doctors sometimes forget that fifty to eighty percent of everything that a patient hears in a doctor’s clinic is forgotten ( or distorted ) by the time he or she gets home. This is why repeated information therapy sessions will help patients make the most of every encounter. It’s possible to train volunteers and clinical assistants to provide this information. It is very reassuring for patients to know that he is in the hands 　of a caring person and that 　the doctor has not forgotten all about him. How often do we hear patients 　saying that the only time they have met the doctor was when they first came to the hospital! Well-off patients have easy access to the internet , but often they complain that the information they receive from their doctor is very different from the information they access on the net, and they do not know whom to trust or how to make sense of this conflicting information.

The end of the treatment often marks the end of the frequent doctor-patient encounters , but the patient’s life carries on ! The doctor is busy taking care of new patients, but the patient is often left high and dry ! The treatment is now over , but what next? Can they celebrate ? Is this really the light at the end of the tunnel , or is it the start of another uncertain journey ? Another 　session of Information therapy at this time would have a great role to play. After care at home needs to be explained; and what followup is required and why. He needs to be reassured that the doctor is available anytime he has doubts and questions – and these doubts are very common for cancer survivors, especially in the first year . Is the fever just a viral infection ? Or is it a more ominous sign ? A patient’s mind plays lots of games – and Information Therapy can help to settle doubts and worries which may be minor to the doctor, but are major for the patient !

There is a huge 　gap in what the doctor knows and what the patient understands. The ideal situation would be to actively engage the patient in his care – and Information Therapy is a great tool which allows the doctor to do so. This is true, even for illiterate patients, provided the tools are designed thoughtfully ! As a patient advocate, I would like 　every patient be provided a recording of the conversation and an after visit summary routinely . A visit to a doctor or hospital is not just a clinical encounter, but a visit to a trustworthy and knowledgeable professional who has the power to find the right treatment to allow the patient to fight his cancer and get better.

All patients are deserving of respect – and the best way to empower patients is with Information Therapy. Who is better positioned to provide this other than his team of health professionals in whose hands he places his life ?

Vandana Gupta

Founder V Care

Mrs Sharma’s house help, Anita, was afflicted with eczema, and needed money for treatment. Her employer willingly gave her the money, thinking Anita would opt for conventional treatment. However, she instead went to a ‘famous doctor’ in her locality. This ‘doctor’ did not have training in medicine, but he did have a clinic.  The only information below his name was ‘Ayurvedic doctor’. Unfortunately for Anita, he was a quack, with no real training in Ayurveda. His spurious drugs exacerbated the eczema condition, making it worse than before. After learning about Anita’s bitter experience, Mrs Sharma, also a believer in alternative medicine, took her to a dermatologist while also consulting a trained, qualified naturopath. 

Modern medicine often evokes awe. Massive gleaming hospitals, expensive computerized equipment and sophisticated scanning machines appear very impressive and reassuring when you are afflicted with a disease. However, paradoxically, even though the effectiveness of medical technology has improved considerably, more patients than ever before are dissatisfied with their medical care today. This situation has resulted in a move towards ‘alternative’ medicine, which has become increasingly popular all over the world. Even in the United States of America (the bastion of high-tech scientific medicine), more than 50 percent of the patients have consulted an alternative medicine practitioner, mainly because they were unhappy with modern medical care.

There are many reasons for this growing unhappiness with modern medicine. Patients increasingly feel that medicine has become excessively commercial. They are unhappy with the impersonal nature of modern medicine, especially when the doctor spends more time looking at their reports rather than with them. While it is true that patients need technology, they also need tender, loving care; after all, doctors need to look after not only their medical problems, but also their emotional needs! Moreover, while modern medicine excels in certain areas (such as complex surgery for the repair of birth defects and the use of antibiotics for serious infections), it has failed miserably in the areas of disease prevention and the management of the myriad chronic illnesses (such as diabetes, hypertension and heart disease) to which modern human beings are prone to, owing to their lifestyle.

Alternative medicine, on the other hand, offers a markedly different perspective. Rather than focussing on a person’s medical problems in isolation, alternative medicine treats the patient as a whole; hence the popular term, holistic medicine. Doctors practicing alternative medicine sit down and talk to the patient; they add the element of personal touch, and ask many questions. Such attention feels good, and is in refreshing contrast to the modern doctor who rarely has even 15 minutes to spend with the patient. (Often, tender loving care and personal attention are all that alternative medicine practitioners have to offer, but they offer it very well indeed!). There is no doubt of the efficacy of the placebo effect, and many ailments will get better when the patient has someone he can talk to. Moreover, the simple act of a comforting touch can have a therapeutic effect. Alternative medicine doctors are very good at reassuring patients, which is in sharp contrast to the cold scientific approach of western medicine.

Unfortunately, the practice of alternative medicine in India today leaves a lot to be desired. For one, such medicine does not have a universally accepted scientific basis; hence, it is difficult to rigorously analyze its claims. Since there is no need for formal publication or peer review in alternative systems of medicine, there is little scientific documentation available about their efficacy or side-effects, making it difficult to confirm or dispute claims. Consequently, one has to blindly trust the doctor. Authoritative journals or texts are difficult to find. Most publications use little scientific rigour and are based mostly on anecdotal case reports, with little documentation or proof. Since there is no official monitoring of the practitioners of alternative medicine, anyone can make tall claims and get away with them. Also, there are few formal training requirements, and anyone can practice alternative medicine, with minimal skills or qualifications. This had led to the mushrooming of unscrupulous practitioners or ‘quacks’, who are out to make a quick buck. Alternative medicine practitioners need to be made accountable for their actions to ensure that they are up to date with their education. Also, some type of peer review mechanism needs to be put in place to ensure the safety of the public. Otherwise, there is a grave danger that medicine can become a ‘bastardised’ system (for example, there are homeopathic practitioners in India who prescribe allopathic antibiotics for coughs and colds).  This can have a considerably detrimental effect on patients. Even worse, it actually amounts to cheating patients both financially and emotionally, since they decided to shun allopathy for a more ‘natural’ approach!

Alternative medicine has its place in society, but the above issues must be addressed. One of the reasons for this sorry state of affairs is that alternative medical systems receive little official support and minimal funding. The situation often deteriorates into a conventional versus alternative medicine confrontation, with each system belittling the other, and this is a real tragedy. By ignoring alternative systems, doctors may be depriving patients of better medical treatment options. There is one common underlying principle of medicine that doctors should always keep in mind – patient health is top priority.  Essentially, all doctors are on the same side.  We all want our patients to get better, no matter what system of medicine we practice! Then why discredit each other?

The combined knowledge of both old and new healing modalities is ultimately superior than a single-model approach to health and well-being. After all, no system of medicine can claim to have a monopoly on knowledge! What is needed today is a clinically responsible balance between the science of modern medicine and the comfort of alternative medicine. We need to combine the best of both worlds, much like fusion music does, and physicians from both ends of the spectrum can learn from each other! Indian doctors must be willing to blend an open, receptive mind with the scientific discipline needed for rigorous research. If they adopt such an approach, they can become world leaders in providing the best medical care to their patients, given our immense patient population and rich traditional medical knowledge base.

This is where Information Therapy can play a key role, and help to bridge the gap. There is still immense confusion about alternative medicine systems with regard to what works and what does not. For one, many of these systems do not have a sound scientific basis, which is why modern doctors are so skeptical about their claims! After all, if you progressively dilute something, common sense will tell you it will become less effective. How can homeopathy make the astounding claim that a higher dilution increases potency? Isn’t this counterintuitive and illogical? However, just because we cannot understand the scientific rationale behind the alternative medicine does not mean that it does not work! There are lots of drugs in western medicine for which we do not understand the precise mechanism of action, but we still use them all the time!

Sadly, a lot of alternative medicine practitioners are quacks. They take advantage of the fact that many of these systems do not require formal training or licensing. They pick up a ND or MD degree from some online university, label themselves as ‘doctors’ and start practicing. To make matters worse, they take great pride in making tall, ridiculous claims. Thus, they promise to cure everything and anything – something which no self-respecting doctor (or patient) can possibly accept! They end up losing all credibility and a result of which the entire system of alternative medicine gets a bad reputation. There must be stricter laws in place that prevent such quacks from flourishing. Public awareness is of paramount importance.

Alternative medicine, when practiced with integrity and sufficient medical knowledge, can be helpful. There is lots of empirical evidence that alternative medicines do work well for some conditions – but no system is a panacea for all ills. Sadly, rather than working out a common solution, there are mainstream versus alternative medicine battles. These are primarily being waged for financial reasons, since systems that acquire legitimacy can earn their practitioners lots of money!

Why does Western ‘modern’ medicine pejoratively label other systems as being complementary or alternative? This smacks of cultural arrogance – after all, Ayurvedic medicine and Chinese medicine boast of a far longer track record than western medicine! And Western medicine does not have a monopoly on knowledge! Patients simply want to get better. Most do not really care how. Then why have this silly demarcation and unnecessary mud slinging? Instead, we can use all this energy to learn from each other!

Personally, I hold the opinion that there are only two types of medicine – effective and ineffective! The dirty little secret is that lots of accepted ‘treatments’ in western/ mainstream/scientific medicine are ineffective and have never been proven to cure. These include billion dollar interventions, such as cholesterol reducing drugs, disc surgery for back pain, and bypass surgery! So conventional medicine, just like its alternative counterpart, can also mislead. It is important for practitioners of both systems to see the larger picture.

How do we separate the good from the bad and the ugly? Information Therapy rears its beautiful head! The goal of effective Information Therapy is not to label treatments, disparage them or make judgments in the air. It has an uncomplicated mission  – providing authentic reliable information, and allowing patients to make well-informed decisions. Then whether they head to an MBBS-qualified physician or one with a degree in alternative medicine or consult both is entirely up to them. The reassuring factor will be that they will at least make their decisions based on knowledge and facts, and not whim or fancy!