I would like to share with you my presentation at Doctors 2.0 & You. For me it is important that patients know what the world is talking about when it comes to health.
When I was ‘just’ a patient and wasn’t engaged in health as much as I am now I always missed that someone told me what was going on. It is true that I didn’t really do much research, but I wonder… Would I become a more engaged patient earlier had I got more information? I believe so. That is why I not only attend health events but also tell the whole world what I have learnt: it is the best way to empower and engage people! 😉
Why me at #Doctors20?
I won’t say much about myself (you can find more of my story in this link anyway 😉 ). My name is Nuria and I am a person like you all: I have a degree in economics and a masters in finance. I have worked for small and big companies and devoted my life to reach my goals. As you see, like anyone of you.
But I happen to be also a patient. I have lupus, an autoimmune disease in which my own defenses attack my body: skin, joints, heart, kidneys, blood… It can attack any part of myself. It has also attacked those goals, made me turn them down and change them for another ones. That is the reason I am here: my lupus doesn’t let me work (at the moment!) and I had to redirect my life and my goals.
Anyone could be here at #Doctors20 instead of me… As you can see I am no special person. Only one that has a blog and listens to people every single day. Through their comments in my blog they talk about their worries, their dreams and, over all, they talk about how relieved they feel to see they are not alone.
How did I emerge?
Many patients emerge as a POL just by chance. That was my case.
When I was diagnosed I never wanted to know anything about lupus, patient associations nor anything. Well, I was 14… I only wanted to have fun and enjoy life. I had a «good lupus» that behaved well and let me carry on with a normal life.
Later on, however, it got somehow complicated. Little Nuria gets kicked out of wonderland to fall into the very deepest of the depression hole.
It was in that hole that this so called POL emerged.
And I emerged thanks to other patients who made me realize I was doing it really bad. Yeh, it was thanks to Twitter!!! Where I saw other patients with chronic conditions had a life full of stories that I also could live.
And that was they key word: LIVE. Have a life!
So I wrote and wrote and wrote to take out all what I had inside and that was not letting me see other options in life but wait for it to finish. Always well accompanied (as you can see) I started blogging in English in «The Lupie Cave» (now closed, at least temporally).
It was only when I felt ready that I created my blog in Spanish. I felt I needed to do for others what other bloggers had done for me. My first two posts talked about the need of us patients to get out and talk and I also talked about some things that helped me with my lupus. Silly things like creams and stuff like that.
I could have never expected the reaction I got: other patients were congratulating me for taking this step forward and, whoa… They were asking me about treatments, what lupus really was, why it was happening to them…
I listened and made some research… to find people was right: there was a real need for information that patients could understand, use and share with others so that they could also understand what they were living with.
And that is how I started to write about how it felt like to live with a chronic illness.
From blogger to POL
I am only a patient that has put a voice to what it feels like to live with a chronic illness. At the beginning it was my way to get a better life in which lupus was not my enemy but my companion.
It has been by listening to people that my web www.tulupusesmilupus.com has become what it is today and that I have become a POL (pledge out loud) person. I don’t really like to be called POL :p .
Social media and the 2.0 world is letting patients talk. We not only want to be more active in our illness treatment and follow up but also in what the world says and do about us. For us.
We want to take an active role in that. I am no doctor, but as a patient I can give my opinion… I know my needs and I know the need of other patients because I talk with them and listen to them every single day. I use apps to help me live with a chronic illness, take care of myself help my family take care of me and have a better life. All of us.
Social media and POL’s: Am I a POL? Is pharma approaching the right people?
According to Wikipedia (I think this is the first time I use this source!!!) «Patient Opinion Leaders (POL), are individuals who are well versed in a disease either as sufferers or caretakers of individuals with chronic disorders and share their knowledge on the particular disease with others» and that in most cases happen to share this knowledge in social media: Twitter, Facebook, blogs…
The right question is not how much I know about lupus… You want knowledge? Ask a health specialist: doctor, nurse… As I do every time I get asked to talk about treatments and more specific stuff.
I am no doctor and I don’t want to take over their role.
The answer to all that is ‘Yes’. However, if the POLs are measured by their influence in social media or the position they hold in a patient association pharma may not get to the right people…
[tweetthis url=»http://wp.me/p5vxX7-1g5″]Should POLs be measured by their influence in social media or the position held in patient associations? #Doctors20[/tweetthis]
Sad to say, I had read awful things that are not true about lupus… Worst thing is that affirmations like «lupus patient never get better» and «lupus patients are doomed to social exclusion» came from a big patient representative…
That does not represent me nor the reality of what lupus is.
That does not help patients!!!!
Believe me when I say it is hard to have to write about these matters… It’s hard to see how patient representatives do not represent the reality of an illness and speak only for their own needs.
Regarding social media, people can follow anyone… I am still surprised by the followers I got! And it is not the people that follows me or the name I have who defines if I am a POL but the content I speak about and the way I do it.
What defines a POL is a big YES to all the above questions and the fact that he/she listens every single day to patients. Not lupus patients but patients, families, partners and friends.
We all have many things in common if we talk from a psychological point of view. But ok, we talk about illness? Then we can talk about treatment adherence, heathy life habits and patient education.
POLs and pharma
Any POL can help with the issues I just mentioned… Why only approach an specific illness when creating a mobile app or a platform? I have seen sooo many tomes great mobile app, health games or platforms made for another patients/conditions… What about me? I could use them to get better!
This seriously has made me think more than once «Damn it, I wish I had that illness!»
Why should I have to think something like that? Like if I didn’t have enough with lupus…
This takes me to the final point I would like to bring up here and that I would like you all to think about: Pharma, patients and therapeutic indications.
I take 20 pills a day, but only 1 of them is specifically for lupus. That means I am not a «member» nor I can be one in many «pharma clubs».
Lupus, alike many other illnesses, is the ugly not popular girl in school 🙁 .
And, alike lupus, many illnesses are treated with drugs that are not specifically indicated for that condition (off-label drugs).
Is it fair that we are not accounted for? Be it fair or not, it does not have any sense. It is closing eyes to reality and I know it is not compliance’s fault… Pharma is not always «the bad guy» but the laws that will not let pharma get closer to patients when it could be a win-win situation.
I am being prescribed their products by a doctor.
I am using their drugs to get better…
Why aren’t they allowed to help and be helped unless there is a therapeutic indication? Patients are working to make this change. Is pharma doing the same?
I think it’s time we think out of the box. The box of an specific condition to open the health world to everyone.
We all need the same and are the same…
We all are people, right?
Why not be treated the same way?
In every way?
You can see my presentation in #Doctors20 on SlideShare: