Thursday, August 22, 2013

The Role of Patient Experience in Health Care in Nagaland



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.

Wednesday, August 14, 2013

On parking tax in Kohima


Sent to Morung Express, Nagaland Post, and Eastern Mirror for publishing
 
This is not my first choice topic to write in a newspaper. Some people have already written very well on it in the local dailies. But there is no response from the concerned authority on the questions put forth. Therefore, I will be simply repeating what some people have already pointed out. If you are a driver in Kohima, you probably have felt at least a feeling of uneasiness about the parking fees being collected in Kohima. You get unanimous opinion in casual conversations that something is just not right. It is not that Kohima drivers have not driven in other cities and do not have the experience of paying taxes. It is also not the amount of rupees 10 which the vehicle owners find too much an amount to pay. It is something deeper; it is a question of right and wrong, about doing something rightly or wrongly.

Is parking fee in Kohima for the public good?

There are toll taxes along the highways which are maintained by private companies. Because you pay the tax, you get good roads in return. So, for a service (time saved and bump-free ride enjoyed), you pay for it (toll tax). There is a consensus that certain basic amenities should be provided by the government for free. Health and Education are two examples. So, we have the concepts of Universal Health Coverage and Free and Compulsory Primary Education. Even though certain public services are considered free, there are taxes from elsewhere which are used by the government to provide such common good. For example, the groceries that we buy have taxes included in the MRP. So, we citizens do our part to expect the government to provide goods and services which otherwise individuals ourselves cannot provide for the community.

Does the parking fee in Kohima qualify as a public good? Where is its return? Where are parking spaces that parking fees should be collected? Does road-side parking (for lack of parking space) qualify for collection of tax? Does the re-designation of a certain road-side make it become an official parking lot? Are parking fees collected to employ volunteers to discipline drivers to park properly? In that case, is it a fee or a fine? Are the ten rupees collected to build parking lots in Kohima? What proportion will that contribute to the total amount required to build parking lots? Are there no other source of budget allocation by the government for construction and maintenance of parking lots than the charging of Rs. 10 from drivers? I’m sure there are people like me who have experienced driving round and round Kohima main town searching for a parking space. If there is no visible improvement in parking facility and taxation is continued, that will only compound public irritation. 

Is it a fee or a fine?

Before the introduction of parking fees, there were complaints that many drivers do not park their cars properly. That is a legitimate concern. The authority collecting the fee may argue that after parking tax was introduced, traffic problem due to wrong parking has improved in Kohima. That I think is right. But if parking fee is introduced to correct drivers from wrong parking, parking tax is not a fee, it becomes a fine. The problem with parking fee becoming a fine is that there are many sensible drivers who - with or without parking tax - will park their cars correctly.  So, by imposing a universal fine, even ethical drivers are pulled in to pay the penalty of some others’ wrong. If there are penalties/fines for wrong parking, that is a different matter. Now, will introduction of parking fine build good parking behavior? Unlikely, if researches are to be believed. It will prevent wrong parking for fear of a fine, but it will not build character. Michael Sandel, a Harvard Professor wrote a book on this, citing researches from various walks of life how fees, fines, and incentives may be counterproductive when they are introduced to build character. In his book, ‘What Money Can’t Buy: The Moral Limits of Markets’, he argues that imposing market values like fees/fines can crowd out civic virtues, in this case, the sense of proper parking.  To impose parking fees to discourage parking just because our roads are small and clogged is to make the victim pay for a crime that he suffered.

Where does a parking lot end?

I was beyond High School Junction and parked in the Secretariat Road, or so I thought. Out of nowhere, a hand with a yellow slip passed in through my window. So, where does a parking lot end? Where does High School Junction end and Secretariat Road begin? If a car parked in the Secretariat Road is taxed, the entire stretch of Secretariat Road may well be a long parking lot. The parking lots seem to be growing so that soon, tax collectors may start knocking at your doors.

What about several short stops?

On the same Secretariat Road episode, I pleaded with the tax collector that I won’t take long. But he said that even dropping someone is taxable!! They have started collecting taxes for droppings. Every day, I make a less than 5 minutes stop so that my sister can buy refreshment for her office. Every day, it is becoming a harrowing emotional and spiritual tussle with the over-enthusiastic tax collectors. Sometimes, we stop several times while shopping. Sometimes, we want to check a particular shop and found it closed. So, we return to our car in matter of seconds. But if droppings are also charged as the collector says, the only way to drop a friend at the market (if you forgot your wallet) is to have him jump out of the moving car.

Why so enthusiastic about parking tax collection?

If our government employees were half as enthusiastic as the tax collectors, Nagaland would have been an economic powerhouse. I must appreciate their zeal, efficiency and speed. Like mobile service providers who are razor-sharp in cutting your phone balance to the last paisa for every dropped-call, one stick flickering signal, crossed-connection, etc., the tax collectors are worthy of Governor’s Gold medal for the most efficient public service in Nagaland. I fail to understand that Nagas should be so good at collecting taxes when work culture is not one of our strong points. You turn around and see none of them. But as you open your car door, there it is; the yellow slip. Fine. The only worrying bit is this: When they are more than one, and each is trying to outrun the other to get to you first, you pay but are worried if your 10 rupees is in safe hands.

Monday, August 12, 2013

Two books: Wright and Sandel


N.T. Wright: The Challenge of Jesus: Rediscovering Who Jesus Was and Is

This book by N.T Wright (New Testament Scholar and professor at St. Andrews) is better than I expected. This is not a proper book review by the way. And I’ve read it just once. It is a small book packed with valuable insights on the person of Jesus. Jesus? Haven’t we known all there is to know of him? Not really. Why should we study him in detail anyway if we believe what he says? Wright takes us into first century Judaism: being still in exile although back to their homeland from exile, waiting for a messiah (not a purely spiritual sin-forgiving Christ as we think), how Jesus understood his vocation ( The chapter Jesus and God is a tough one), the resurrection as new creation (and not simply that it means you can now go to heaven), post-modern critique of arrogant enlightenment and Wright’s critique of postmodernism itself-to appreciate but also go beyond it and to come out on the other side. The Chapter, ‘The Walk to Emmaus in a postmodern world’ takes the cake. It is a beautiful, beautiful chapter. Let me say more after reading the book again.


Michael J Sandel: What Money Can’t Buy: The Moral Limits of Markets
Everything is up for sale: paying up to jump queue, paying people to stay healthy, making money out of expecting people to die early, paying kids to read books, paying to get license to kill an endangered animal, etc, etc. Sandel (Professor at Harvard University) argues that there are non-market goods in the society which should not be for sale. When a non-market good is commodified and put up for sale, it corrupts the good. Against popular market reasoning that standard economics does not corrupt the goods it transacts, Sandel argues that market crowds out morals. Through examples as given at the beginning (there are so many examples in the book from various areas of life, amazing how he collected all of them), he highlights the ethical dilemma when markets are applied to walks of life erstwhile not touched by market economy. Sandel's arguments are few (although useful and sufficient), but the examples in the book are enough for readers to conclude for themselves that the markets have gone way too far.

Thursday, August 1, 2013

Love


What's there in the achievement
What's there in the accolade

What's there in the name
What's there in the fame

When there is no love?