Salzburg Global Seminar just started yesterday. The title is "Toward a Share Culture of Health-Enriching and Charting the Patient-Clinician Relationship."  Although participants come from various countries, such as Austria (of course), the UK, Sweden, Brasil, Swiss, and the USA, this is a little homogenized atmosphere from my perspective since most are Caucasian people and educated or have their jobs in North-America and European countries.  In that atmosphere, I remembered how it is like to be a minority and use the second language in a foreign country. This was the sense that I kept having while I was in the United States more than 15 years ago.  Putting myself in such a situation is significant since I am a privileged majority in Japan who naturally forget and ignore the perspectives of the minority.

a cute cat at the reception

But this does not mean that I feel alienated from the session. Rather, I feel included because of the environment that directors and coordinators attempt to establish. For example, I am very much surprised with the fact that Tom Delbanco, a co-chair of the session, and John Lotherington, a director, kept reminding participants not to speak fast since there are people whose first language are not English.  I am deeply appreciated such unexpected comments stated by Tom and John since I experienced the situations many times where people unconsciously thought that you were nothing if you don't speak English fluently.

Schloss Leopoldskron

What do you want in a land called PeoplePower? 

Welcoming speech of Clare Shine

Our very first discussion was what you, a patient, want in a land called People Power- which is an imagined utopian land where patients can access to all of their medical information freely without any fears of divulging personal information (with a bid support of Prime Minister!), use big data related to their diseases, and even e-mail their doctors without any hesitations if they have any questions.

So, what do you want in this land?

Many insights are shared in the group discussion, and these are the things came to my mind.

TRUST:  Electronic devices which enable people to access their information, and policies that protect their information from divulging are essential, but trust in everything such as politics, doctors, pharmaceutical companies, evidence, and devices must come first and foremost.

LANGUAGE: In order for patients to access medical information freely and become a valuable member of the medical team, they should have rights to say anything uncertain openly to their doctors. I was wondering how this could be achieved in Japanese settings where language per se creates a hierarchical relationship. For example, patients call doctors "sensei" with their surname. "Sensei" means a teacher and immediately implies that they are superior and in power. Patients hold themselves back and are fear of offending "sensei" for the sake of protecting their own lives. In what way can I be in a land called PeoplePower while speaking Japanese and maintaining the Japanese cultural values?

Health Care System: Japanese can access to any types of hospitals and clinic without any barriers, and because of the national health insurance we only pay 30% of the total cost (people who are above 75 years old only pay 10% of the cost). I heard that people in other countries often do not have free access to medical institutions because of the policies  Although this Japanese system is in economic crisis, this system would help greatly those who are in People Power.

Related to my research:
I am currently conducting a field work in cardiovascular diseases with a particular focus on atrial fibrillation (AF), which is a type of irregular pulse of the heart.  If you have AF, your risk of having brain infarction increases. Anticoagulation therapy is widely used to decrease the risk since AF is a disease that is difficult to be cured completely. Thus, the treatment focuses on reducing the body's ability to form clots in the blood. However, if you take anticoagulation, the risk of bleeding including intracranial hemorrhages, the most serious complication, is increased.

However, in 2011, a new antithrombotic drug, called DOACs (there are 4 types of DOACs), started prescribed in Japan. With the evidence of the huge clinical experiment called the RE-LY trial, pharmaceutical companies advertised dabigatran, a first DOAC landed in Japan, like a magical drug which drastically decreases the risk of intracranial hemorrhages but does not increase the risk of brain infarction. Many doctors are now replacing warfarin-a drug widely used before DOACs-with DOACs. However, not all of them just welcomed these new drugs and some institutions doubt the benefits of DOAC for various reasons.

First of all, DOAC was represented as decreasing the risk of intracranial hemorrhages by 2/3 compared to warfarin. This result looks tremendous. However, if you look at the actual data, the risk of intracranial hemorrhages decreases from 0.76% to 0.23% per year.

 Do you think this is a drastic reduction?

Moreover, what we need to look at is the cost. DOAC is 10 times as expensive as warfarin. We need to think about whether we really want to pay this amount of money to reduce 0.53% risk.

 Furthermore, issues surrounding DOAC are getting more complicated since  Medwatcher Japan, an NGO that was launched in 1997 to monitor and prevent drug-induced disasters, warned that some of the results of RE-LY trial are actually in doubt, and more than 500 legal actions related to dabigatran have already taken in the United States. Medwatcher Japan also pointed out that pharmaceutical companies paid about 1 billion yen to those who created a new guideline of AF that recommends for clinicians to use DOAC widely.

Based on that situation, how much information must be given to patients with AF living in a land called PeoplePopwer? Should they only have the summary of clinical evidence or should they actually look at the real data of the trial? Should they know that some are critical of the uses of DOAC for diverse reasons?