Sunday, November 04, 2012

How Patient Support Groups promote Health Literacy

Many years ago, I was a patient in one of India’s leading hospitals, being treated for cancer. I was educated, well informed and literate, but I still felt completely lost. My doctor was taciturn; and it was hard to ask questions; and even harder to get answers. This experience was what motivated me to start a support group for cancer patients when I recovered.

One important thing a patient support group provides on a day-to-day basis is quick, specific feedback on a particular disease—feedback in the middle of the night, on weekends, during holidays, as well as throughout the week. Even a 24-hour advice nurse cannot provide this because the nurse must work from general knowledge, while patients work from specific knowledge of the disease in question. Because patients realise how important patient support has been to them, they naturally want to bring this service to areas of the world where it does not exist. Thus V Care came into existence to bring us together. This is how health care is going to evolve, and it is a movement that is not to be feared, but instead to be welcomed, as patients become more informed and more involved in their own health.

For most people the diagnosis of Cancer is a death sentence. Patients coming to a hospital are intimidated by the vastness of the place and the highly technical language used by the physicians. The staff seems to be overworked and busy; and no one seems to have time to spare for the patient. There is little opportunity to understand the procedures; and they have to cope with pain, loss of dignity, vomiting and a host of other unpleasant side effects – as well as the hospital bills!

The Outpatient Department (OPD) in the busiest department in a hospital. There are various problems faced by the patients in the out-patient-department such as filling in endless forms; lack of privacy; overcrowding; long waits; and lack of proper guidance, that leads to patient dissatisfaction. Patients are looking for hassle-free and quick services and this is only possible with optimum utilisation of resources through multitasking, by using a single window system in the OPD.

The staff in the hospital is familiar with the room numbers and locations of labs and scanning machines, but patients and their families get lost very easily in this inhospitable environment. Just telling them to go to a particular room number without giving them direction or its location just wastes their time and adds to their anxiety. As a support group, we are much more patient- friendly, and we can think from the patient’s perspective because we’ve “been there, done that”. We become the bridge between the patient and the hospital, and can guide them when they are stuck. We know the hospital and its staff well; and can help to lighten the world load of staff members by assisting patients and their relatives.

Financial constraints are a major issue with patients and families. We help relatives by explaining to them the procedures of getting cost estimates; meeting the medical social worker; raising funds by going to various trusts for financial aid; and filling in the forms in order to apply to the government for aid. Since the hospital staff focuses on the medical treatment, helping with financial assistance is best done by volunteers, who can ease the burden for patients by teaching them about the procedures and formalities.

During our interaction with patients, we hear of the many problems that they have to deal with. We can use our collective voice to help patients get better care. Thus, as a patient support group, we have been able to lobby and get the government to ban tobacco and gutka in some states; ensure easier availability of morphine for pain relief; and get travel concessions for relatives and patients.

Patients have the most to lose from low health literacy, and while individually there is little they can do, as a support group we have the numbers and the strength to speak on their behalf. One of the most potent ways of moving health literacy on to policy agendas is by telling the stories of patients who have had difficulties with health services as a result of their lack of literacy skills. Patient support groups can identify such stories and the people behind them, and make them available to policy-makers and the public through the media.

Little differences can make a world of a difference. I remember a patient whose family members had not eaten anything for over 12 hours, because they were being made to run around from pillar to post in the unfamiliar hospital settings of a strange city. It was an easy matter for one of our members to help them out because she knew the ropes. She took them to the hospital’s chief administrative officer; helped them to complete their paperwork; and then took them for dinner. There are many such incidents, and a loving touch, proper guidance and the fact that – “We are with you at every step“ makes all the difference to the patient who feels lost and helpless.

Patients also want to learn more about their disease, its treatment and its side effects. Is it contagious? Is it hereditary? Are other family members as risk? Should they also get tested? As a support group of recovered cancer patients, we understand the need for simple to understand, easily readable information in local languages. We have developed many such booklets, to help answer the common queries of patients. Patient support groups can be a very valuable source of patient-friendly health information, and our ability to communicate this clearly plays an important role in helping patients to recover.

When I was first diagnosed, I asked my doctor for more information about my disease. He just thrust a big fat medical textbook in my hands and said – Here, read this – it will answer all your queries. I remember being petrified because the chapter just seemed to be a long catalogue of all the possible complications that could occur – both as a result of the disease and its treatment, and how to manage these. Now while this maybe useful information for a doctor, I thought it was callous of my doctor to burden me with all this unwanted technical information, most of which went over my head. In retrospect, I realise that he did not know any better – and didn’t have anything else to offer me. However, the truth is that the patient has many doubts and needs to know many small details, most of which may be minor for the doctor, but are major for the patient. Will my hair grow back? Will I be able to have sex? Whom can the poor patient ask? Doctors are too busy to worry about such trifles when they are busy saving lives – and patients are quite scared to ask the doctor too many questions. A support group provides a welcome comfort zone, where all questions can be happily asked and answered.

As a support group, it is easier for our members to talk to doctors, because we are well and well-informed. We can help the doctor to see the patient’s perspective; and we try to make the administration understand the challenges the patients face. We try to make the doctor-patient bond stronger so they can trust each other and rely on each other for complete cooperation.
Over the years, we have learned that:
•    Patients expect doctors to fully explain the disease, cost and treatment plan, before hospitalisation. Sadly, most doctors still do not do a good job with doing this.
•    The attitude and behaviour of nurses and paramedical staff towards family members, caregivers and attendants needs to improve. The patient’s family has a key role to play in the patient’s healthcare, and they should be respected as powerful allies, rather than being treated as unwelcome intrusions.
•    For a health care organisation to maintain and improve its standards, constant monitoring of the perceptions and expectations of the patients and their family members is essential. Hospitals need to ask for feedback, and to act on this, if they want satisfied patients.
Patient support groups have a valuable role to play in improving health literacy. They help by:
•    sharing experiences, contacts, and information resources;
•    providing explanations for technical terms and procedures;
•    offering unbiased and trustworthy advice; and
•    providing reassurance, by letting patients know that they are not alone.

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

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

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 11 from that book and is authored by Vandana Gupta, the founder of V-Care

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