E-patients – Engaged, Empowered, and Enabled : One Patient’s Story

October 8, 2011
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It’s fitting that in a book which talks about how we can use Information Therapy to put patients first , the last word goes to the most important person in the healthcare space – the patient!
Jay ’s blog, Stork Stalking, can be accessed at http://aboutplanb.blogspot.com/. She is my role model of an e-patient – the expert patient who is active and articulate and is changing the face of medical care. There is great power in Participatory Medicine – and when used along with Information Therapy, Health 2.0 can transform healthcare.

It’s fitting that in a book which talks about how we can use Information Therapy to put patients first , the last word goes to the most important person in the healthcare space – the patient!
Jay ’s blog, Stork Stalking, can be accessed at http://aboutplanb.blogspot.com/. She is my role model of an e-patient – the expert patient who is active and articulate and is changing the face of medical care. There is great power in Participatory Medicine – and when used along with Information Therapy, Health 2.0 can transform healthcare.

To explain how Information Therapy has helped me, I need to provide some background. I am, by profession, a scientist, whose extensive training has included an education in all the life science disciplines (which include immunology, cell biology, genetics, biochemistry, neurobiology, and developmental biology). This training has given me an advantage that few patients outside the medical field possess. My condition is an infertility of sorts. I am a single woman, who is trying to conceive using donor sperm. At first, it seemed like everything was right with me. All my tests looked absolutely perfect on paper. I conceived on my first attempt. Everything went smoothly until the end of the first trimester, where I discovered my baby had died, around 7 weeks. Most people, at this point, would have just had a D&C, but would not test the products of conception for an abnormality because their doctors would never order this test voluntarily at that point. It was my training as a scientist (which instills a need to have answers for everything) that primarily compelled me to ask the doctor to run the karyotyping test for my baby. Many women who have suffered multiple miscarriages start having this test done only after the third loss – as a result, they are left with no idea of what went wrong the first few times and hence do not have the information to know which treatment option would be best suited.

As a patient, you have to be your own advocate. No doctor is going to go that extra mile for you, unless the doctor taking care of you is a physician you personally know. Without this, the factors that dictate the medical care you receive are statistics and economics – many tests are not run and only a standard protocol is followed. It is very easy to be aggressive and go the extra mile when you have been trained like me? But what do you do if you have not had that training? Google everything – try every single permutation and combination of query phrases. While writing this article, I googled ‘tests to run after a miscarriage’, just as a training exercise. I did not need to do this after my own loss, but had I done so, the first page that pops up tells you to do a karyotyping.

So Google – Then, spend a few hours reading the results and then use Wikipedia to try to make sense of it. I also read the original scientific studies, either using the Google Scholar or the ‘Pubmed’ databases. It is very easy for me to say, ‘Go through this massive amount of information and make sense of it.’ But what if you are somebody who hated biology in school and are struggling with an incredibly vast information overload? Even the most uneducated, biology-hating patient can become an expert, if the determination is there. You don’t need to become a doctor, but you can easily become an expert patient. There are lots of patients online, who will be happy to hold your hand and help you, even if your doctor is not willing to do so! Far worse than having to deal with an information overload in a subject you detest is the sense of not understanding what you are up against. If you are lucky and have a good physician, that can go a long way, but not all of us are guaranteed to have good physicians. There is nothing as painful as the combination of a bad doctor and an ignorant patient.

And sometimes, you can find the answer to your own problem. Continuing my story, we found that my baby was a boy, with a normal XY karyotype. Most pregnancy losses exhibit abnormal genetics. My doctor at that time looked at this result, and flatly turned down my request to run more tests. I saw another doctor, who did order some tests and discovered a mild thyroid autoimmunity that I was subsequently treated for. I went on to try to conceive again, and succeeded immediately. Unfortunately, that story had the same ending, another pregnancy loss at a similar time point. Shortly after my second loss, I met Dr Malpani, who ordered a test for a hormone called AMH. While giving blood, as a stroke of blind luck and happenstance, I decided to get my Vitamin D3 levels tested. I wish I could claim that this all-important test had been ordered by me as a result of extensive and logical internet searching, but no, it was about as fortuitous and accidental as the discovery of penicillin. When my AMH results came back, they were low. It was a grim, scary result that did not make sense. The only other abnormal finding in my blood work panel was that I was also Vitamin D3 deficient. This is the point where the internet was of profound use to me – I googled ‘AMH and vitamin D3 deficiency’ and found a study which showed that Vitamin D3 can bind to the AMH gene and ‘switch’ it on. It is then a logical argument that if you are Vitamin D3 deficient, you might have issues with AMH synthesis. I decided to increase my Vitamin D3 levels and retest my AMH, and like magic, it went up, and stayed up. If I had not found all this by myself, it probably would never have come to light. It was a combination of incredible serendipity and using the internet well. This has been my one giant payoff from my incessant googling, but there have been many, many small ones as well. Being well informed can save you many missteps.

When you are lost and looking for answers, message boards are also good places to log on to. And then there are blogs. Blogs, in my experience, are not that good for gaining information, but they can be very useful from an emotional standpoint. Be it cancer or infertility, both are horribly isolating. If you suffer from any disease or condition, you are probably one person surrounded by about 50 other healthy people who will never have such an issue. Moreover, while they are genuinely sympathetic, they are uncomfortable when you talk about this problem and have short attention spans when you are going on and on about it. Basically, it is not their problem. Blogging gives you a way to connect to people who WANT to listen to you, who can provide the kindness that can only be generated by empathy, since they too have had the same experience as you. Plus, the act of writing down what you feel can be incredibly cathartic. Being in ill health, for any reason, is incredibly stressful. Blogging helps take away some of that stress. If you can start a blog, then do. It has helped me tremendously in my darkest days.

In summation, yes, the internet is an incredibly valuable resource. Not using it, and continuing to allow a doctor to make all these tremendously important decisions for you, while not having a clue as to what is happening, is not prudent and can be potentially dangerous. What’s the point of being literate if you refuse to read? Is there a downside to having access to tons of information available? Yes. You need to look at the 1000 little details, and then step away, and get a true sense of the big picture. This is not at all easy, and many people can look at one tiny study and panic, many times, unnecessarily. You can get hopelessly confused by all the contradictory information out there; and trying to decide on which path to follow can be very challenging. This often leads to paralysis by analysis! How do you deal with this? As an example, I’ve seen many, many studies that show that if you test positive for anti-thyroid antibodies, you might be at a higher risk for miscarriage. Then there are the studies that show it has no effect. There are doctors in both camps and honestly, nobody has a real clue. That is most often the crux of the issue – nobody knows the right answer. What do you do? You look at the suggested fix to the problem – is it safe, inexpensive and easy? If it is, go for it, whether you believe it to be a problem or not. If it is not an easy fix, then that is where the real issues lie. Sometimes, we have to put our faith in something expensive, difficult or even potentially dangerous while not knowing whether it will work.

When nobody knows what is the right call to make, and everybody is straddling the fence, if you know enough and have the strength to do so, then you should be the one that makes the decision as to which path to take. Sometimes, that is the best we can hope to do. I have learned that you rarely regret the things you do – you usually regret the ones you don’t. When you are at a crossroads, please remember the Serenity Prayer – God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference. At the end of the day, you should have the peace of mind that you did your best, and Information Therapy can help you achieve this goal.

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