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“What the heck am I doing here?”- That is what I thought the first day in #e4pbarca…
@juanfuertesguil, Pulmonary Hypertension patient advocate)
“Don’t stop it here, keep collaborating and lets share the outcomes in #e4pbarca next year”
(Alan Roy @alanROYGBIV , Ataxia patient)
“It has been so refreshing being able to actually see pharma is doing something to get closer to the patient needs and it’s taking stepts towards #PatientCentricity
(Mike Young @ElGringoInSpain, Diabetes ePatient and patient advocate)
As of for me, as I said in the closing keynote of EyeForPharma2015, being able to be there has meant a complete change that I hope I can spread all across both pharma and patient communities.
As many of you know, I have been tweeting in Spanish and English from day zero. At the beginning it felt so wrong for me to mention the speaker and the pharma company who was talking! I felt like if I was going “into the dark side”… I felt afraid of patients getting angry at me and judging me for having “sold my soul” to “the enemy”.
But that was at the beginning!! Because very soon I started feeling comfortable enough and talking about whoever I wanted regardless what other people may think about me. The fact of having a relationship with pharma does not mean I am a bad person or that I am pursuing any “dark” goal… It only means I want to help them help all of us!! Pharma, alike us patients and patient associations, make mistakes. Absolutely everything in this world can be improved and that is why we must collaborate: because they see things we may not see and vice versa.
If there is something I have learnt at #e4pbarca is that there is nothing wrong about talking to pharma. All of us are people and, as you can see, there is nothing to be afraid of.
Don’t believe me? See! My great handsome “bodyguard”, as he named himself haha :-). Absolutely loved meeting you, Marqus!!! 😀
Oh wait, there is another picture with Jill Donahue and Paul Simms that is just great and that I will share with you all as soon as I get it ;-). I really think this pic should get to everyone with the message “pharma and patients are people. Why not talk and collaborate?”
Yes! Why not talk and collaborate?
And that’s the big big question, guys! Why not collaborate when…
- No-one but patients and caregivers now best how living with an illness is and what we can do to make our lives easier (and happier and healthier as a result!).
- We may not have the scientific knowledge in order to develop a new drug, but patients are eager for information about drugs and clinical trials (and, of course, our illness and what we can do to get better!). And you know what? There is nothing better than a patient to talk the patient language and help other patients. I can tell you that! 😉
- We talk about money? Good! We may have very good ideas on how to save money to the health system so that treatment access is easier for everyone everywhere. Maybe if we had been asked ages ago about this issue we had said: “the e-prescription would save a lot of money. Most of the times I only go to the GP to get them…”. I cannot imagine how much time (and work) I have saved to my GP thanks to the e-prescription!!!!
- An illness is not only about pills and treatments. It’s about educational resources and how it affects us socially and psychologically. This website you are reading now is mainly in Spanish and talks patients (in the patient and person language) what lupus is, what an autoimmune disease is and the treatments that are available for us. I tell people about each treatment, what it does, why our doctors have prescribed it to us and, of course, I talk about the possible side effects and its symptoms so that we can be aware. Of course as well, I always say “don’t you worry, nothing bad has to happen! Are you afraid? Do you have any questions? Don’t be ashamed nor afraid to talk to your doctor!”
- Treatment is not only taking a pill (or 20!). I am healthier and loaddddds happier (and healthier and so on like a good vice circle) because I have good quality information about my illness and I know I am not alone because there are many patients that know what it feels like to live with a chronic disease. When writing about how it feels to live with depression and the fear of not being able to work again or be a mum I find that I help other people. Isolation is something we need to treat. Lack of information is something we do need to treat! And that is a field where pharma can do so much!
- Does pharma know what kind of information patients need? Do they know what patients need?
- Does pharma know how to engage with patients?
- Does pharma know what they can do to stop being “the bad guys”?
We do know!!! And we are so willing to step in and help out!
Andrew Schorr, from Patients Power, pointed out something really interesting and real: a patient’s (and caregiver) journey is long and has very different stages. I don’t need the same kind of information (and support) at the age of 14 and now that I would like to become a mum.
I could carry on with this for ages, hehe :p.
Because we are! We are not here to criticize and demand. We are here to help you help us.
What have I talked about with pharma guys?
Not about treatments. Not at all!!! As an empowered patient I talk about my treatments with my physician. That is what we all should always do 😉 .
When you represent a group of patients and talk to pharma you ask what patients and patients associations can do to change some things (like compliance) and improve another ones and discuss possible ways to collaborate:
- Patient information and support tools.
- Caregivers information and support tools.
- eHealth, gamification and (even more!) educational tools and resources.
- Spread awareness.
- Make people more confident about going into clinical trials and actually knowing what it is all about.
- And so on!
I have found simply beautiful the fact of many telco, marketing and pharma guys (and doctors!!!) asking me about lupus and how my life with a chronic illness is. I love people feeling free and confident to ask me because
Being able to talk about the way many patients and caregivers are socially and psychologically affected by illness in front of so many no-patients has been… I cannot find the words to describe it!!! 🙂 And I really hope all of us have make a positive impact in #e4pbarca.
The main issues
It shocked me to see that most of the speakers shared the same view: compliance and regulatory issues is a big barrier that pharma encounters when it comes to talking with patients. Not that it’s the only one, but it’s a tricky one.
Actually, it shocked me so much that one of the questions I ask was
The answer is YES and this is where patient associations must jump in… But not independently, pleaseeeeeee. Together we are stronger and, in the same way patients are asking pharma to collaborate, I am asking patients associations to collaborate as well. We could get so much further!! In fact, that was another thing that was said in the event that shocked me: pharma is also asking patients to work together. The actual wording was “integration”. Patients organizations need to be integrated to be stronger.
Not only we can “blame” the legal department guys for all the issues… Communication is something we all (all!!) must work in. Patients are asking for more transparency and communication. As Anne Beal from Sanofi very well stated
“Many times we fail b/c many times we ask patients q’s that are important to us but not to them” +1000RT! Bravo @acbeal @sanofi #e4pbarca
How to manage a culture change towards patient centricity? “Communicate communicate communicate”- @acbeal from @sanofi #e4pbarca
What are the core values for patient centricity?
Core values for #PatientFocus: #transparency, partnership, continuity #e4pbarca @acbeal @sanofi #LoveThis!pic.twitter.com/GWpto1wAdD
And what I wonder is… Are patients association and pharma working together to see how they can get those core values? Are we, patients, asking ourselves and pharma how can we help get that?
The world has changed
So… What do patients ask from pharma?
This was the question from #e4pbarca and these were all the answers. Most of them talked about communication, technology, seeing the person and not the illness and collaboration. We really went crazy writing stuff here. I have to admit you only have to give me a writing tool and there I go!!! (Well, you are seeing it now, haha).
Before #e4pbarca started I launched the question to the patients. All of them said the same, which Mike and I put up in the wall: universal access to treatment and be brave to break the barriers we have.
As Thomas Sutton wery well stated…
There are armies of patient advocates willing to help other patients; give them a channel! #e4pbarca
And the fact of us being as many as an army does not mean we are something to be scared of! Just look at Mike and me. We look lovely, don’t we? :p
I would like to thank EyeForPharma for including the patients in this event and I really hope others learn from this great experience and call us in for many events and projects.
Thanks to Tania Caballé for calling us in and for putting the focus in the patient voice and not individual patient associations. As much as I know they are key in society and I actually am part of several of them as volunteer (which I reeeeally am prod of), I truly believe patients association also need to collaborate between each other and put the patient in the centre (I am going to be killed for saying this but it is what I think!). If I had gone as an association I would have talk only about “my” patients’ need. As a patient I talk about all chronic conditions. No matter the name, we have loads of things, feelings and life limitations and dreams that are the same.
Thanks to Blair, Paul Simms and all EyeForPharma team for making us feel comfortable, for thinking about our needs and being so kind. Jill, Lode, Danielle, Marqus… Oh so many! Amazing. Simply amazing.
I am so grateful to have been able to have a chat with all of the ones I have not mentioned: UCB, Leo Pharma, Sanofi, Astra Zeneca, Novartis, Telefónica, Bayer… Gosh, so many again! 😀 Thanks to you all for being so refreshing and open minded. For getting close to the patient and working towards patient centricity and share your experience and knowledge so that others follow your lead! (If I forgot someone, please let me know!!!).
My thank you present to pharma
As a thank you present I would like to share this video with you all. Someone at the event said that pharmas do good things and that they should be able to tell beautiful stories… And that is right. That is why I want to share this with you: a video that was recorded at our last lupus patient gathering in 2014 in Palma de Mallorca.
The patients you see dancing sevillanas are María and me, both lupus patients. I know we both have gone through really rough patches that we both would like to forget forever. Many people with chronic illnesses have a very limited life although many of them also can have a normal life or not such a normal life but a happy one: a job, family…
Even though many people like me cannot work and are quite limited, there are also times when we get better and can… dance sevillanas!! 😀 And doing so is something beautiful that we get, partly, thanks to the great job you all guys do everyday.
I hope our joy gives you wings in the same way these little moments give us strength to carry on and keep enjoying little things in life. Our life may be not as easy as we wished, but the research and the job you do everyday make it possible for people like María and me to be able not only to dance sevillanas the days we feel better (which is not always) but also to have hope because there are treatments that can make us feel better. And as for those patients who live with rare diseases or live in countries where all these treatment don’t reach out to… I really hope we can do something so that everyone can dance sevillanas at least from time to time.
More about #e4pbarca:
– Spanish article (not the same content, but similar).
– “Je suis un patient“.
– “What do patients want from pharma?“- Patient Empowerment Network.
What Do Patients Want From Pharma?
– Some videos in EyeForPharma: