Meet e-patient Kathi

Written by Silja on 5 September 2011 in epatients - No comments

There aren’t many patients as active on twitter than Kathi Apostolidis, aka @kgapo. Kathi was born and raised in downtown Athens, Greece. She is a Public Affairs Consultant and her career was in international marketing and trade, strategy, communications. The unique blend of her cultural background, health experience and professional skills allowed us to digg a bit deeper into the impact of the European economic crisis on access to medicines in a video interview.

Before you move on to the video though, let’s get to know Kathi and her epatient parcours a bit closer. Hi, Kathi, please tell us a little bit about your background.

 

I have worked with both international and Greek companies and with public sector.  My focus is on strategy,  branding, communications and marketing including social media. This is my morning hat because after hours I have a second one, that of health advocacy. I have studied Classics, French Literature, as well as Political and Economic Science at the University of Athens and Business Administration at McGill University in Montreal.  Besides Greek, I am also fluent in English, French, German and Dutch.

 

Very impressive CV, Kathi. I can imagine some these skills came in handy when you became an epatient yourself. Could you tell us how you got started?

 

Although I am an otherwise healthy person, I have experienced some difficult health situations. Just to mention a few, I have had a thriller like second pregancy, breast cancer twice, a painful and lengthy recovery from rotator cuff tear (shoulder pain) and an unforgettable dreadful broken shoulder plus rotator cuff tear that reversed my life for two years…..

However, if I put everything on a scale cancer and the broken shoulder were the two most physically and psychologically stressful experiences. What led me successfully through these tempests? Knowledge, support and teamwork.

Knowledge came from my inherent curious self. For serious health issues, I always take a second opinion, and as early as 1983, when there was no internet, I had learnt as much as I could about the problem that had appeared during my second pregnancy. I believe that we, as patients, have to understand how our body functions and if disease occurs, what it is and how it affects us as a whole person, that is both our body and our soul. If we know our body, we can more easily understand the messages it sends us, and do what it takes to heal it.
When I was first diagnosed with breast cancer in 1990, my sister flied in from Brussels with a pack of books among them “Love, Medicine and Miracles” by Dr. Bernie Siegel, “The Bristol Programme” by Penny Brom, “Vitamins against Cancer” by Kedar N. Prassad, “The Cancer Prevention Diet” by Michio Kushi/AlexJack and many other. As at that time, I also had an acute larynghitis that needed to be treated before going for surgery, I had some time to read and organise myself.
The two weeks before surgery were enough to read in one shot “Love, Medicines and Miracles”, then tackled “The Bristol Programme” and some other medical ones on the physiology and treatment of breast cancer. I started to make a plan for a second opinion.

After a traumatic first round of visits to four different oncologists who did not even dare to explain why a mastectomy was necessary but ushered me to the secretary for a surgery appointment, it was clear to me that I had to learn more about methods of treating breast cancer. I decided to see, if I could find an oncologist inclined to discuss the then brand new method of lumpectomy.

It happened that we had in the office our first computers with internet connection! That was very cool, back in 1990 and I made an exhaustive search in breast cancer patient organizations for resources, insight and support, which at the time were mostly American ones with a few British.

To make a short story long, I found finally an oncologist who wanted to discuss lumpectomy and I fixed a surgery appointment with him. In fact, he did not exactly perform a lumpectomy but rather he removed a quarter of the breast, something that only several years later I learnt was not necessary, a much smaller lumpectomy would have been equally safe…

Still, the knowledge I acquired and my involvement with cancer patient organizations proved instrumental in coping with a second breast cancer occurrence ten years later. The knowledge helped me to understand my options and be firm about my preferences when discussing them with my oncologist. It also relieved to a great extent the anxiety I had the first time…

The knowledge I acquired and my involvement with cancer patient organizations… helped me to understand my options and be firm about my preferences but also opened my eyes on where my advocacy efforts should be directed.

Support in serious disease is of key importance, I would say as important as your therapy. The therapy addresses your body and support addresses your spirit and soul. Before going to the hospital talk to your family, to your best friends about the health problem you face, ask for their assistance and support during the hospitalization and the few weeks afterwards.
Now, we also have our online buddies in social networks. Members of online patients communities are eager to share information, resources, I do even know of patients who offered to travel to another city to accompany a lonely one to a medical appointment! Do not hesitate to ask your online community for advice on coping with the disease. They are the ones who have walked the path before you and can warn you and offer tips…. I have remarked that members of online communities are caring despite the fact that they have never met each other and most probably will never meet.

As for me, I have, as we do in Greece, a caring warm family. My family, my sisters, my friends were all very close when I had health problems and helped wholeheartedly. I also followed the advice of Bernie Siegel on how to prepare for operation….My daughters pictures and paintings were stuck on the wall in front of my hospital bed and were a conversation starting point with staff and visitors…. Bernie, as he likes that we call him, gives a lot of advice on spiritual and other support for cancer patients, such as meditation, visualization, etc. My copy of “Love, Medicines and Miracles” and my old book –Getting Well Again- of the Simonton method after passing from the hands of many friends are now really torn out, but I keep and still consult them, because they have been a good captain for me in the rough seas of cancer…

Support in serious disease is of key importance, I would say as important as your therapy.

Teamwork is the key for complex diseases as cancer but also other like, orthopedic surgery. Anywhere, where more than one medical specialty take rounds in treating you. In Greece, we do not have yet a multidisciplinary approach to cancer. This means that the patient goes to the radiologist gets her mammogram, which she brings to the oncologist, who decides, he may further sent her for lab tests, which she takes back to her doctor and so on until at the end, the patient has a big pack of tests carrying them around at every appointment.

All these specialists never communicate amongst themselves about the patient. Each one simply writes his report in as few words as possible. When all these reports are brought back to the oncologist, he is supposed to make sense out of them and decide the best course of action….If the patient asks these specialists about their findings they all answer “your doctor will explain to you….”.

If you are hospitalized, things get even worse. All kinds of tests go to your dossier. You can claim these reports afterwards but only the reports, not the copies of imaging.  So during hospitalization there is a big risk your dossier is not updated and complete, and there is very little chance that the oncologist will ask the other specialists about details or clarifications!

If there is a disease that needs teamwork it’s cancer…

 

Was this the reason why you decided to become active as an epatient? To change things?

 

 

Yes, this has to change. The Mr. Oncologist-God-on-Earth has to change. It is still common here that the physician announces the diagnosis and his verdict, without letting the patient know whether there are other options that can be considered, or asking what is his family and work circumstances. I will remember forever how distressed I was with the four Oncologists-Gods-on-Earth I ran away from at the time of my first breast cancer diagnosis, when they dictated their single option and their annoyance and refusal to listen to me, the patient…

However, if there is a disease that needs teamwork it’s cance. I was lucky to find doctors who at least listened to me despite the fact that they were not really ready to fully cooperate with the patient. I do not blame them too much for this, because till now they are not trained for collaboration with the patient, patients are not equipped and empowered to challenge the paternalistic medical approach, the healthcare system is built on the unique expertise of the medical profession, and patient experiences serve only to prove the position of the medical profession.

I would like to help in changing the way healthcare services are delivered, the way doctors  communicate, engage with patients. I would like to see patients and doctors working in partnership against disease and doctors helping patients to understand and become empowered. I would like to see doctors inviting patients to informed shared decision making and patients speak out about their needs and preferences.

How has social media helped you advocate for this change?

 

 

To be frank at the beginning I was laughing at twitter, I thought it’s just a loss of  time… something of a game for the idle moments  in the office. Not any more! Social media is the best medium for reaching out, sharing resources, connecting with people with common interests, fundraising . Personally, I have come to prefer twitter over all other because it is direct, short, with very wide reach and if you know how to use you can reach in rather short time considerable results.

Together with Nicos Papachristou (aka @ehealthgr) and other friends we started #opnHealth in  July  2010 as the first Greek conversation (tweetchat & Facebook page) in social media on health, healthcare and ehealth and social media for healthcare.  #opnHealth is the Greek version of #hcsmeu, however we decided that hcsmgr would be too much of guesswork  for our Greek friends, so we opted for #opnHealth. ;-)

I am also pleased to have my own blog to talk about what I want to share with others.

If social activists knew the power of the social media and how to harness it to the favour of their cause, they would be all day connected!!

In your opinion, what are the best information sources online for your disease at the moment? in EU? in US? in Greece? from Pharma?

 

Breast cancer is the most widely covered disease on the internet. I find  the Medline-plus a good starting point and once one becomes more knowledgeable, he/she can move to other sites like Pub-Med , NIH or NICE.  As a member and reviewer of the Cochrane Consumer Network, I also consult a lot the The Cochrane Library. What’s worth noting is that all Cochrane reviews are accompanied by a summary in lay terms, that is easily understood. Also a well structured online resource is the http://www.cancer.net/portal/site/patient by  ASCO. English as the universal language tends  to become the only language of health. In Greece, we have only information in translation from the big websites mentioned before but very little genuine information in Greek language.

What information is missing?

 

 

The answer is very easy and concerns also the Ministry of Health website, the Public and Private Hospitals and pharma websites: they are static and patients are ABSENT. It’s like patients don’t even exist. They speak about them not with them. I do not have statistics about the popularity of Greek pharma websites among patients but I doubt they have many patients looking at their content. What characterizes Greek pharma is their static websites without interaction  of any kind and absence from the social  media. Not to mention that some do not have specially conceived websites for Greece but one-two pages on the corporate website.

What is also missing are the possibilities to interact online with these stakeholders, even if offline: only  telephone numbers during working hours are given, no doctor telephones/emails are given out by hospitals. Many hospitals in Greece omit the names, profiles, phone numbers and email of the doctors serving in any given department. Have you ever tried to locate a doctor through the main telephone switchboard? Then, you know what I mean. Maybe it’s also the doctors who do not value the online presence and neglect to send to the staff in charge their profile and details.

Online health and healthcare information is still in its very early beginnings in Greece but we hope that with the rising number of internet and social media users it will also evolve…

 

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