The story about working in health care — a patient & doctor’s point of view.
A major change is taking place in the field of health care. And the scary part is that the majority of people haven’t accepted that yet. The availability of self-monitoring, the internet and even plain simple education has turned the medical field as we know it upside down. Patients become doctors, doctors become patients and nurses have to be the translating mechanism between both parties. The strange part though is that the majority of people in both groups haven’t realised that their roles are changing. I'm part of both fields, and it is scary to see, because I honestly don’t know what will happen when both fields will find out about it.
I have to see a lot of doctors and medical experts every year. This is because I was diagnosed with an autoimmune disease called type 1 diabetes 28 years ago. It’s an extremely intrusive disease that requires me to have a lot of discipline and commitment. Thanks to the developments in the field of medicine, I am enjoying a fairly healthy life. Even though that I have passed the “median age” for developing secondary diabetic complications 8 years ago, I'm satisfied about my quality of health. Sure, the daily injections, low- and high blood sugars, nauseousness, mood swings, hospital visits, tests,uncertain future and medication taking is something that I have to take for granted, but in return I get the opportunity to do whatever I want to do, just like every other person without a disease.
Overtime, I've turned myself into something what my diabetic nurse calls “the patient that knows more than the doctor.” Recently I've graduated from medical university and started working in health care and have started a company in bridging technological innovations to health care because I believed that there was a gap in interactions between doctors and patients. I believed this gap was caused by a cultural indifference between parties. And it’s a given fact that this problem in patient — doctor interaction is not only present in the field of diabetology, but in practically every field of chronic disease management.
My dear friend and colleague Sara Riggare is a true example and a fighter for better and more educated conversations between patients and doctors. She is pursuing a doctorate degree at Karolinska Institutet in Stockholm in Quantified Self among patients with parkinson’s disease. Quantified self (QS) is a relatively new movement where the usage of self-monitoring tools such as health trackers, meters, phones and other devices is encouraged to create raw personalised data that can be used to improve treatment plans and increase health outcomes.
And this quantified self is a big problem for medical experts that we need to start facing now….
You would believe that better data, statistics and facts would be welcomed by medical experts, but so far there is sadly a small amount of doctors and nurses that truly take advantage of this source of data. And I truly think this is caused by that cultural difference between doctors and patients.
It takes long hours of studying, tests, exams and residency programs and if you’re lucky, after eleven to sixteen years you can call yourself doctor. As a doctor your knowledge in the medical field needs to be exquisite. You need to have knowledge of conditions that you’ll most probably never see in your whole career, and how to treat them when you do get the chance to see it. Every patient wants to get that feeling of being understood and know that you know what you’re talking about. This puts a lot of pressure on your shoulders as a health professional. At the end, you are the person that they trust their health with. And since the introduction of the term “doctor Google” many doctors felt that their level of knowledge has being taken into doubt.
It is really unpleasant to be told how to do your job. Doesn't matter if you’re a carpenter, a mechanic, or a doctor. Your level of intelligence should deserve a bit of respect and should not be taken into doubt. With typical conditions such as the flu or the common cold you don’t want to be told that you are wrong in your diagnosis because WebMD told your patient that it is most probably a form of <fill in random diagnosis>. Understandably, being exposed to patients more and more that first consult a computer before asking a professional caused many doctors to doubt the patient judgement capabilities when it comes to their health and the things they read online.
The introduction of QS, on the other hand, is not something that can be compared with this “doctor Google” movement. QS, and the presence of information online, has significantly increased the level of knowledge of patients with chronic diseases. So much actually that patients often times know more about the disease than the doctor. And just like the doctor, the patient does not want to be disrespected in their level of knowledge about the disease they have to try to survive with every day.
Every 6-months I have to see my diabetic nurse to talk about my very intense lifestyle. I force myself to monitor my blood regularly to see how my body is responding to all the travelling, lack of proper meals, intensive workouts and sleep deprivation. During these visits I present all the collected data to her and tell her about why I think I need to change to another long-term insulin because I often times travel late and can’t always take my insulin at the given times. I tell her that:
Looking at the data that I have produced, and the availability of a new type of insulin that works 48-hour rather than 24 hours I think this would work significantly better for me and help me in living with my disease but still do everything that I want to do without compromising my health.
See, I am not the typical “blueprint” diabetic that you learn everything about from the books. Just like pretty much every other diabetic I know. Still, many of the medical experts I've seen fail to understand that there is no “standard patient”.
I measure everything and understand what every result means for the treatment of my disease. Just like the majority of other diabetics. And the frustrating part is that our medical experts haven’t fully realised that, which is the cause of the gap between both parties. Numerous of examples in my surrounding take place where diabetics are being told to change their medication or equipment against all recommendations, just because there is a disagreement between doctor and patient. Sadly (or luckily), often times the doctor has the last saying in the way we have to treat our disease. They write the prescription for our medication, devices, and all the other things we need to survive.
What we see now in treatment of chronic diseases are two things. Disrespect among both parties for the way we work on achieving health, and misunderstanding on the reasoning why we work the way we do. Health care for doctors is still everything that happens between the walls of a hospital, and for patients everything that happens once you get outside of it. What we need to realise is that we are working together on achieving the same goals. But as a patient, you use different tools than you do as a doctor.
This doesn't mean that there is a competition, it means that you, as a patient, give more data to base decisions on, and you, as a doctor, use previous cases to help find the best solutions. Health care has always been a field that wants to be convinced over and over again with evidence that you are right in the things that you state. Therefore it takes a lot of effort from both parties to find solutions that work. The sooner we realise that it’s not a competition the sooner we can start making health care better.
