Navigating the sea of health information was never easy for patients. Back in 1990, things were very different . The Doctor was almost the only source of information about disease, options, prognosis and patients would rarely look elsewhere for more. Patients often left the doctor’s office with unanswered questions or poorly explained information about their disease and more than often without touching prognosis or end-of-life discussions. In the late 80s-start of 90s, patients would turn only to close family and friends to discuss a cancer diagnosis, that was de facto a well kept family secret…In 1990, I was working at the Royal Netherlands Embassy in Athens, and following a ground to ceiling renovation, we also received computers, LAN and internet and waved good bye to the old Remingtons…That Summer, end July 1990, we were on the beach when, applying sunscreen cream I felt something hard on my chest. I didn’t pay any attention but later at the shower my hand stumbled again upon it… Ι realized it was something hard the size of a pea on my left breast. I thought I would rather visit my gynecologist on Monday to check it..
I would like that the doctor gave me some detailed information on breast cancer, what it is, how I got it, what were my options, how this lump could threat my health and my life… Instead what I heard just made me balk at the boldness of the physician. I did not know anything about cancer at that time. I was full of awe for specialists such as reknown oncologists and surgeons.
The “I” he used repeatedly made me understand that he would not listen to me and therefore, I had nothing more to expect from him…I left the hospital in shock and droveback to the office..
At dinner, we discussed the situation. I had heard that mastectomy was the treatment for women with breast cancer, but I could not rationalise that this concerned me. I thought that for so small lesions there should be another method to treat.We decided to contact friends and relatives with breast cancer experience for their advice and suggestions for specialists and hospitals, to contact local cancer patient groups for practical information, to search in the libraries and bookshops books about breast cancer. I felt that I should get organized, learn about breast cancer, get a second or maybe third opinion…
The following morning at the office, first thing I started looking up in the internet for cancer patient groups, breast cancer, and more. As a novice in healthcare info search, I ventured on sure bet sites I had heard about before like American Cancer Society, Institute of Medicine, NHS, ASCO, Suzan Komen, Karolinska…Then, it struck me that I should search for information about removal of very small breast cancers. My search brought me to lumpectomy! This is it! I knew what I had to ask for from a doctor…
I selected five leading oncology surgeons practising in different hospitals among those in Athens last week of July and fixed all appointments in one afternoon. The first would not discuss anything else besides mastectomy, the second was bothered by my questions and pointed to me that I am looking for trouble, similar disappointing results with the third and the fourth. They did not give any further information about other options besides mastectomy, they did not know lumpectomy or did not perform it. So I arrived rather worried at my last appointment with a Surgery Prof. and former Director of one of the public oncology hospitals. The experience was traumatic. At 9.00p.m. his reception room was still full of patients till the elevator, and it was almost 10.00 p,m when finally I was asked in the examination room. I waited half naked almost half an hour till the physician came in with his assistant. He asked her without looking at me: What do we have here? – A small tumor of approx. 1,5cm in the internal upper quadrant left breast. He turned to me and said: Dear, we need to operate this. Your operation can take place tomorrow at X private hospital. I will see you tomorrow at 7.00a.m. to discuss details. I felt a chill on my back and didn’t the condescendent dearness. I managed to say : “ but doctor you haven’t even looked at my mammogram! Will you not examine me?” No, I will do it tomorrow, don’t forget that you shouldn’t eat tonight and that you should be at 7.00am at the hospital.I dressed up hastily and run out coming down the escalator…, At the entrance I sat down on the stairs and cried my soul out..
I was depressed and did not know what more I could do…when during the course of the week, while at a hospital for various pre-operative checks, which I thought good to have done anyway, I saw the announcement for a breast cancer medical congress. I stopped for a moment, had a look at the program, and realised that surgeons presenting in medical conferences was where I should look for a doctor.I noted the name of a doctor who would present mastectomy v. lumpectomy for localised breast cancer, fixed an appointment, but this time I did not go alone, I asked my husband to come with me. I was straightforward: I told the doctor that I had already a cancer diagnosis and that I had visited colleagues of him who all would not discuss other possibilities besides mastectomy. I mentioned my internet search and that I had learnt about a newer operation called lumpectomy and that it was what I wanted to discuss with him. Was my cancer a good candidate for lumpectomy? Does he perform lumpectomy? How other patients with lumpectomy fared? How does he decides how much breast to remove? How we shall proceed? The surgeon answered my questions more or less satisfactorily, I asked him how urgently I should be operated and he assured me that a few days or weeks would not make a difference but that it should not be delayed.
Patients are interested in their particular type of symptoms and disease and if they set out to learn about it, soon they might know enough to prepare for their medical appointment. A medical appointment deserves prior good preparation. Doctors are like any other human, they do make mistakes that is wrong diagnoses, wrong treatments. What can patients do? Dr. Groopman in his well known book “How doctors think” presents with thriller types stories these mistakes, but also offers advice to patients on how to handle a medical appointment.My own suggestions are as followsLearn about your symptoms or disease and treatment options by consulting trustworthy health information sites egpubmed, medline-plus, or any other trustworthy health information siteStart by a detailed, accurate chronological list of your current symptoms and any medicines you take, note also if you feel your treatment helps you or notAsk relatives & friends with same diseaseSearch for patient support organizations Get books on coping with the diseaseCheck programs of disease specific medical congresses for speakers exploring new treatment options.
Sarah E. KucharskiIntimal Fibromuscular Dysplasia patient Founder, The Afternoon Nap Society personal healthcare blog focusing on patient experiences with special interests in fibromuscular dysplasia, stroke, aneurysms, chronic illness, the doctor-patient relationship, the patient-caregiver relationship, health literacy, advance planning and end- of-life issues afternoonnapper.com facebook.com/AfternoonNapSociety @AfternoonNapper
Founder, FMD Chatinternational peer-to-peer support group for thoseaffected by fibromuscular dysplasia;patients, family, friends, healthcare providerswelcomedfmdchat.orgfacebook.com/FMDChat@FMDChat
What is fibromuscular dysplasia?• Vascular disease• Abnormal cell growth causes artery to narrow• Five recognized forms – Medial fibroplasia – Intimal fibroplasia – Perimedial fibroplasia – Medial hyperplasia – Periarterial hyperplasia Fibroplasia = formation of fibrous tissue Hyperplasia = proliferation of cells
Medial FMD• Most common form• 75 to 80 percent of FMD lesions are this type• Affects middle layer of artery• Characterized by areas of fibrous lesions alternating with bulging areas (aneurysms)• Has a classic ―beads on a string‖ appearance on a dye angiogram
Intimal FMD• Less than 10 percent of FMD lesions are this type• Caused by collagen (fibrous tissue) deposits around the inside layer of the artery wall, the tunica intima• Concentric, smooth narrowing (without beads) appearance on a dye angiogram
Me and My FMD• History of GI distress• TMJ & gallbladder surgery as attempts to correct• GI symptoms increased in severity — I though it was normal… • Pain upon eating, day-to-day consumption based on pain, led to food avoidance • Living with an invisible illness
– Blood pressure spike– Failure to respond to medication– Delay in treatment due tograduation/work– Three years pass– Migraines and stroke symptomsdevelop– Family doctor recommends arterialscan– Right renal artery more than 90percent stenosed, celiac andmesenteric arteries completelyoccluded
Renal, celiac, mesenteric bypass - 2005 Married - 2006 Can I Buy Surgical Tape In Bulk? Stroke - 2008 Job eliminated, no work 6 mo. - 2008 Blood pressure rises again - 2008 Realization bypass has failed - 2008 Graduate school - 2009 Left nephrectomy - 2009 Discovery of brain aneurysms - 2009 Three of four aneurysms coiled - 2009 Managing Editor job - 2010 Gastric rupture - 2011 Intimal FMD diagnosis - Aug. 3, 2011 Start FMD Chat - October 2011
Thank you for your attentionKathi Apostolidis-Breast Cancer & Patient Rights AdvocateVolunteer Sector Consultant & Health Commentator @kgapo, #opnhealth thwww.facebook.com/kathiapostolidis www.facebook.com/#opnhealth http://www.linkedin.com/in/kathiapostolidis CREDITS: Art Work from Regina Hollidays Medical Advocacy Blog A place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology.
Why I’m a Twitter Doctor Meaning and Purpose of Social Media for Healthcare Bart Brandenburg
Source: Simon Sinek http://www.startwithwhy.com/
± 4500 tweets sent & received (estimate - some got lost)2415 followers (May 14th 2012) What do we do?0,014 % of population of the Netherlands (16,7 million)0,60 % of active Dutch Twitter accounts (est. 400.000)Source: downloaded tweets from http://twitter.com/tweetspreekuur and http://twittermania.nl
Needs assesment?Stakeholder analysis?E-health readiness test?Business plan? How do we do it?