If a family member is sick, you would like to look up the internet to see what it says. You type in some key words in Google and you will find several pages of web links, directing you to a lot of useful websites and some not useful ones. You ask for a second opinion from your family relative doctor. You search for experience of other people who have suffered similar ailments.
Patient experience is gaining importance in informing how best to deliver health care. In the UK, patient experience is being researched to guide the National Health Service. It is acknowledged that most patients now search the internet before or after visiting a doctor. Even if an old patient may not be tech savvy, there is a younger family member who can do so for her. There are also online discussion forums and chat rooms where patients are communicating with each other about their disease condition. There is a suggestion that doctors may refer useful websites to a patient in the consultation room. The patient goes home to check it up and in the next visit discuss about it if she likes.
Something similar has already been happening in Nagaland. People are asking for second opinions, and looking up the internet. A facebook group has been started called ‘Ask Your Doctor’ where questions like ‘Where can I find a good skin specialist in Dimapur?’, ‘Doctor, I have chronic backache, what should I do?’ are asked. There is a group ‘Health Focus Group’ where various health issues in Nagaland are discussed. ‘Naga Medics’ group is for Naga doctors. I have been blogging (www.thatchhouse.blogspot.in) about health issues in Nagaland for some years. The Naga Blog has a blood donors list. Through this facebook group, resources were mobilized for charitable works including a drive to renovate the Maternity Ward of Dimapur District Hospital. More and more Nagas will be turning to the internet for all types of health queries.
So far we have not been able to tap patient experience on how to deliver health care. If there are patients’ perspectives in policy making, they are what the policy makers and care givers think will be good for the patients rather than the patients themselves voicing out what they think. Policy making and health care are all top-down. Health policies are made in Delhi which are implemented down to a remote village in the Naga-Myanmar border. There is no questioning of the policy makers’ expertise, and we know a nation-wide policy will not be a one-size-fit-all. What we need therefore, is to study/research how we may best deliver health care in the Nagaland context. From the provider’s perspective, the department of health and family welfare has been trying to tweak national guidelines to meet local needs. What we need is the beneficiary’s perspective on how best health care might be delivered. That perspective is lacking in Nagaland.
There is no Naga health activist or NGO at present to fill in this gap. The only time when we become vocal is when we are reacting to something. Progress in health care cannot be based on reactions alone. We need to be proactive. We need people who are knowledgeable about the health care delivery system. Non-medicos need not be frightened by jargons. Doctors are not the sole custodians of health knowledge. There is a lot of room where experts from various fields can contribute to the knowledge pool. A patient sharing with another patient her experience on how to cope with a chronic disease can be as therapeutic as the doctor’s prescription.
Having drawn the outline that we need to gather patient experience to inform service delivery and that we need experts from various fields to proactively engage in health care, let me get to the particulars by suggesting something that we can do. It is not an original idea but something drawn from the internet. While listening to a podcast from the Website of London School of Hygiene and Tropical Medicine, I heard of a website www.healthtalkonline.org. I checked it out, and thought that is something we can also do in Nagaland.
If you have to take a sick family member to CMC Vellore, you would like to know how to get there, in which Hotel or Lodge to stay or if it is wiser to find a rented house. You don’t know who to ask. Suppose, another Naga family who had gone there had shared their experience and is available online, wouldn’t that be such a valuable piece of information to you? Suppose you have a sibling suffering from epilepsy and you don’t know how to deal with it, you would like to get expert opinion from more than your consulting physician. It will also be very helpful if other families who have dealt with similar condition share how they deal with seizure episodes at home. You have a family member who is dying; how do you cope with it? To hear others’ stories will immensely help you to deal with such a difficult situation. You have a tumour and you are not sure of the prognosis. Your doctor says you are responding well to treatment but you want to know how many years you have. Or suppose you have just heard that your father has a disease of which there is no cure, how do you break the news to him? You took your relative to Tata Memorial Hospital Mumbai for cancer treatment; now how do you process her medical re-imbursement bills? Or it can be as simple as trying to locate a good skin specialist in Dimapur, as some are already asking in facebook. For all of the above cases, what about having a website similar to www.healthtalkonline.org? Health Talk Online is an award-winning website in the UK. It is a rich database of personal and patient experiences, gathered using in-depth qualitative research. It won several patient information awards by British Medical Association and rated one of the best online health resources by The Guardian.
The aims of the site are:
· To share the experience of illness or a health problem and to provide support for patients and carers who may feel that they are on their own.
· Answer the questions and problems that matter to people when they are ill or have a health-related problem and to help them make informed decisions about their healthcare.
· Provide reliable, evidence-based information about illnesses and health problems.
· Be an educational resource for health professionals.
· Promote better communication between patients and health professionals.
Such a venture will require medical specialists, social scientists and researchers, webmasters, donors, and patients who are willing to share their stories to help other patients. I hope Nagas will come up and take up how we may improve the health of our people. Instead of waiting for positive change to come, we can become agents of that change.