Min dag gick i föredragens tecken, eftermiddagen tillbringade jag på Filmstaden Sergel där Dagens Medicin bjudit in Mälardalens ST-läkare samt mig att prata på temat “Patient-läkarrelationen, så gör jag läkaren delaktig”. Jag uppskattar verkligen inbjudan samt att de skruvade frågeställningen ett halvt varv extra 🙂
Jag hade idag nöjet att prata på Svensk Reumatologisk Förenings Registerdag 2012 tillsammans med Carina Andrén under titeln: “Samskapande av hälsa med patienter och vårdproffs”. En mycket trevlig och tacksam publik med ett stort kunnande inom kvalitetsregister. En pdf av min presentation finns här:
One year ago today I met a man. We have so much in common, we share the same values, we have similar dreams, we have common goals.
We met on Twitter, in fact, Twitter suggested me to follow him and his profile definitely caught my eye.
I sent him the first email one year ago today, I have kept it. He responded a few hours later and that was the beginning of our story. We were living in different countries then, me in Sweden and him in Holland. Last summer he moved to Sweden.
He is a doctor, a few… well, if you have to know, he is 8 years younger than me. But age doesn’t matter, does it?
We live 300 km apart, but thanks to social media we have a lot of contact.
My life has been enriched since I met him.
My life, as well as my daugther’s and my husband’s. Because Paul and his family have become very good friends to us. Paul and I are working together on different projects.
A patient and a doctor collaborating. On equal terms. Isn’t that what Health 2.0 is all about?
Thursday last I was invited to speak at the yearly conference for the association of Swedish physicians (http://www.sls.se/), a 3-day event with literally thousands of visitors: doctors, nurses, etc. I was invited to speak on the topic of patient participation and specifically “What happens when a patient turns researcher on their own disease?”. I told my story, my theory of a translational process: from patient back to person (I will desribe it in more detail in a blog soon) and how I will start my PhD early next year.
Since I am a firm believer in learning as the purpose in life, In my mind, I am only doing the logical thing when I want to learn as much as I possibly can about one of the things that affects me most. I am stuck with this disease so I might just as well make myself useful and hope that what I do can help others.
I want to show the way
from researching patients to patients’ researchers!
Getting close to the end of the second and last day of QS2011 Amsterdam and it has been truly inspirational, extremely intense and a fantastic experience! Today’s highlights from 1/3 of the Stockholm jury:
The lunchtime ignite talks were AMAZING! Kees’ way of describing mirroring his twins’ QS experience, Jochen’s talk on how his 40 years-check-up changed his life, Nancy’s unexpectedly effective placebo pills, Steve’s fascinating story of the Barcelona asthma epidemic.
The constant intake of fantastic food.
The contagious sharing experience
The founding of QS Stockholm (Johanna and Martin, we ARE doing this, right?)
My choice of skipping breakout session 6 to gather my thoughts before the last session before we all break up from this magical meeting.
My first ever day at an unconference and the impressions have been numerous. I love the idea of having the focus of the meeting on the breaks between the presentations, since everybody knows that the really sparking ideas are born over a cup of coffee and some strange looking local speciality (in this case I would call it as the mandarine mousse for the win, or maybe the odd-looking fruit with thorns or spikes…).
Among the ideas/impressions I will take away from today are:
The AMAZING workshop on Personal Data Visualization, curated to perfection by the ultimate mix of design, art and data management in the trinity of the hosts.
The tweet: @martijnhulst: Nice quote: remember if you’re not paying for the product you are the product. #privacy #qs2011
The discussion on how to address data that could be percieved as negative for the person.
and of course all the amazing meetings with generous, amazingly passionate and fascinating people!
Being a student of Health Informatics at the Karolinska Institute has introduced me to a number of interesting concepts. Already during our very first week in August of last year, we heard about “patient-centered healthcare”, “shared decision-making” and “patients as co-creators of health” and to a highly opinionated and severly inquisitive patient such as myself it is quite simply music to my ears. It was simply a match made in heaven and me and my student colleague with MS (yes, what were the odds of TWO highly opinionated and severly inquisitive brain disease victims actually ending up in the same class….) had a wonderful time asking our teachers to elaborate on the patient perspective to the point where I would guess our more normal classmates of medical and computer backgrounds from all over the world probably wanted to smack us to make us keep quiet.
However, the true “Eureka-moment” came when I first heard about “Health 2.0”, which in the words of Lucien Engelen means “the new relationship between health care provider and patient” (from A little booklet about Health 2.0, 2010). I would guess that the definitions of Health 2.0 are at least as many as the number of people working in the field, however to me personally it signifies Patient Empowerment in its true meaning, giving patients wanting to take more responsibility for their own health a means to do so by in the optimal way using the Internet and social media. To me Health 2.0 is about a
more equal sharing of responsibilities within healthcare by acknowledging the patients expertise and experiences of their illnesses and collaborating to give all stakeholders a better outcome. To me this is the only way to meet the increasing burden of illness in the world and I am certain the “revolution” is just starting. See you on the barricades!
We all know that excercise is good for us. We do. And those of us with PD know
that for us excercise is more than good, it is essential. Yes, I know, we know it, but we don’t always act upon it.
I spent my first 30 odd years actively avoiding every kind of physical excercise, and quite successfully so. In hindsight I can see several reasons, the most important being the severe resistance my PD symptoms gave me. I mastered avoiding PE classes in school and never sat foot in a gym. But one day found me better medicated and more
motivated and a very unfamiliar feeling filled me… I actually enjoyed excercise… I was shocked!
Let’s face it, the proof is overwhelming, EXCERCISE IS GOOD FOR US… There are numerous scientific articles to that effect, the most recent probably being: http://www.ncbi.nlm.nih.gov/pubmed/21750523. And excercise doesn’t have to be going to a crowded gym or running endless miles on a dusty road. For me, the most rewarding training is putting my sometimes failing body to good use around our country house, doing gardening or similar. I had not given it much thought though, until the other day, when I found myself hacking away at a pitiful excuse for a lawn that we were trying to turn into a patio. The plan was to take away a few inches and then fill it up
with gravel and top it off with a substantial number of reasonably flat large stones. Suddenly it dawned upon me that I was actually enjoying straining my body and found an unfamiliar pleasure in using tools designed centuries ago when gardening was more about surviving the winter than a pleasant pastime or
A few days later, I realised why I had enjoyed blistering my hands and working myself to a sweat. It has to do with fear, with love and fear. Because I will admit I fear PD. I fear what may come. I fear the unknown. But I have a choice. I can either let the fear paralyse me or I can use my fear to drive me to working against what I fear. And I feel love doing things that works against the things I fear. So from a former excercise-phobic and with every aching muscle I get from working out, I say: In your face PD!