Doctors2.0 & You – Patients: Evangelists or Rock Stars? – Doctors: Paternalistic or Partners & Educators? – Part 2

Workshop B-The new patient-doctor relation at “Doctors 2.0 & You” International Conference – Paris France-Wednesday, June 22, 2010

Participants: Kathi Apostolidis, Peter Becznik, Gilles Frydman, Angel Gonzalez, Dr. Bryan Vartabedian, Dr. Franz Wiesbauer

Below are my notes on the workshop,  which give an extended summary οf the discussions held, as per my previous post

The communication of the diagnosis to patients was a key topic. In a medical appointment,  it is the doctor who is in the strong position and it his duty  to explain the disease and diagnosis in terms that the patient can understand. Moreover, the doctor should always make sure that the patient has understood his instructions by asking relevant questions and giving written instructions.

Research has proved that patients do not retain more than 40-50% of the doctor’s  explanations and instructions, and that is why it is advisable to keep notes during a medical appointment or even to ask the permission to register the discussion, so that the patient can review it calmly at home.

It is not only an ethical obligation of the physician to fully inform the patient but also a legal one, in many European countries. I mentioned that in Greece we have legislation on patient rights since 1992, which stipulates it is the duty of the doctor to explain fully and clearly to the patient his health condition. Other participants  mentioned  that similar legislation exists in France. In addition, in Greece the patient rights legislation is re-enforced by the Code of Medical Deontology that also clearly defines the obligations of the physician towards the patient as far as clear, detailed and understandable  health  information is concerned.

Ethical or legal obligation, the question of adequate patient information remains. Do doctors fully understand patient information as their duty, what means for them clear and complete patient information and how they practice it? Particularly when they have to communicate a critical disease..

In the discussion that followed, physicians in the audience were asked to share their experience on communicating disease and therapy options to patients.  I was surprised to see that the physicians were a minority in an audience of approx. 70-75persons. One lady surgeon commented that reading and comprehension skills of patients are not self-understood nor equal in all patients. She added that physicians too have their short-comes in that they encounter difficulties in explaining disease and therapeutic options without using medical terms.

Health literacy and nowadays digital literacy are key for finding and better understanding complex medical conditions e.g. cancer. However, the general health literacy level of the patients should not be an excuse for the physician to avoid communicating efficiently health information, therapy options and instructions to patients.

Dr. Bryan Vartabedian from USA (@Doctor_V),  commented that different levels of patient education and understanding  are  a real challenge for the physician and told us about a simple patient information tool he has installed in his practice: a white board on which he jots down the key issues, of which  the parents can take a picture at the end of the appointment. Thus, they can bring home the key point of what the doctor said. Another participant referred to the length of the medical appointment as decisive factor impacting the quality and extent of patient information.  A remark on the patient’s reading and comprehension skills was made pointing out that what the patient comprehends may vary drastically from what the physician explains. It was also noted that many doctors find it difficult to speak outside medical jargon, in just lay terms…

The need to train medical school students in health literacy skills for patients and communication was taken over. In Greece communication skills are offered only as an elective course, which is not opted for by many students. As it is a vital skill for several medical specialties,  it should become instead a core course for the 3rd and 4th academic years and supplemented with seminars taught jointly by experienced physicians and patients.  Doctor Vartabedian noted that it is also the case in the USA but that the most advanced hospitals offer a few internships in medical communication.

Cilja Chouquet/WhyDotPharma (@whydotpharma) remarked that in Europe we don’t have the kind of “rock star” patients that are in numbers in the US. The patient advocates in Europe do a hard work advocating for their disease but they are very low profile, they are not seen in conferences, they are not invited speakers at congresses or on TV, they do not write articles for the press…Mrs. Chouquet believes that there are differences in how advocacy is practised in Europe and in the US, and she linked this to the many European languages when  in the US patients across diseases speak the same language.

I commented that there are indeed differences and some have to do with the language, while there is a more important cultural difference. European patients are rather low profile, they do not like to be called e-patients, survivors or even advocates and that they prefer the plain term “volunteer”… Being a volunteer means that you offer to the community without asking for rewards.. or even no money perks like being invited to speak to an event… I mentioned that I know several cancer patients from other European countries, who do an excellent advocacy work but they are known only into their small local disease area. Examples of European e-patients were mentioned from the participants and the panel…

Peter Becznick talked about his Facebook community for Hungarian pace-maker patients and the difficulty to convince patients to register, as they do not like to be identified as such, Moreover, even if registered they do not interact by fear that their friends will see in  their timeline their association with the pace-maker community. I also referred to the stigma that certain diseases still bear e.g. HIV, incontinence. This results in very few patients willing to participate in these patient organizations or online communities.

Gilles Fry (@gfry) explained why Facebook is the wrong platform: there is no privacy, which is fundamental when talking about so personal issues as health. People prefer listservs that is an older technology but one with many advantages. It is a very sophisticated software which you can make as open or as closed as you want, you can make changes to it… For ACOR, they decided from the beginning that archives and conversations should not be very public.

The discussion drifted to technology and it was mentioned that often it is not the platform that is in default but the use we make of it. If technology is used merely as a means to cut cost and reduce services, then, it does not serve patients, who will soon understand the motivation and will not use it…

Denise Silber wondered about the rate of adoption of ICT in healthcare among the baby boomers as information from pharma shows that adoption is to be found in the age group 40< . In Europe, where we have older populations in many countries it is worth knowing whether these groups are active on the internet and social media..

A senior doctor from Bangladesh, Dr. Hassan startled the audience by mentioning that in his country a large part of the population is illiterate. Physicians often do not know much more than their patients and refer them to the divine will , and patients do not have the means or the possibility to check the credentials of  the physician… So there is no comparison at all between the European and the Bangladeshian healthcare  models…and as for  the internet this is not something local doctors use.

The activities of the physicians on the internet and social media were discussed next. I mentioned that in Greece there are many doctors on the internet but none talks about health and healthcare. They just talk about music, film and gossip and do not conceive social media as a platform for medical marketing and promotion. Doctor Vartabedian remarked that in US most of the conversations on twitter among and with doctors is a “soft dialogue”, related to medicine but not specifically to patient cases. There is very little dialogue in the public sphere concerning patient-specific cases. There is a great concern about privacy and disclosure, and if you have to de- identify information it’s a real nuisance.

Various doctors only platforms, among them SERMO were discussed and the value they offer to physicians to consult with colleagues on cases, but on the other hand this possibility was contested as in real life, physicians rarely consult colleagues on a case… Besides physicians are reluctant to produce content on the net, they rather consume information.

Content for the net and resent being linked to non serious issues. The majority of doctors are consumers of information A lot of physicians don’t want their name attached to a question that turns out to be stupid. A lot of them go on the internet to consume information and then leave.

Cilja Chouquet asked what patients would doctors to do on the internet, what would be considered valuable for patients. My comment was that patients would like to hear from doctors about what happens in their hospitals, any new therapies, novel surgeries that save lives. Physicians could also act as educators in social media, offering or curating valuable content about wellness, disease prevention, healthy living. They have a role to play as in many countries health information portals are mushrooming, because health and wellness are topics that interest the public. Often their content is just quick translations of news copied from other health portals and health press agencies. –

Dr. Vartabedian noted that the physician as educator is an important aspect of a doctor’s work but this is not foreseen by healthcare institutions, that should foresee time allocation for professional communicators for this task. Doctors don’t have the time to curate, translate content, it’s incredibly labor intensive.

That was in broad lines the summary of the panel discussion and the contributions from the audience.

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