Focus = Patient Engagement in Healthcare / Patient Centricity.
Last week I was honoured to have been part of a Patient Engagement panel at the industry renowned pharma event Eye for Pharma which was held in Barcelona. Now as the event title suggests this is usually restricted to those who work in the Healthcare/Pharma industry. So I was delighted to be participating as a patient together with a handful of other patients with various conditions and rare diseases ranging from Lupus, Cancer, Pulmonary hypertension to Ataxia.
Although we as a group were fighting / living with a range of conditions we each shared a common goal which was to actively push for a wider understanding of chronic illnesses. We also quickly found that these conditions and the patient communities within these shared a common core ranging from access to health care, better education for patients and healthcare professionals, more support for the caregiver to more universal access to medications and treatment.
It may be apparent that patients typically fear big pharma companies, possibly resent them at times and are often seen as the big bad wolf within the health care setup. I think that all 5 of us who were representing patients, patient groups and of course ourselves were apprehensive. Unfamiliar talk, buzzwords to the extreme and a sense that we as patients were here as a token gesture.
This proved not to be the case, finding that our vision is shared by those as Nuria stated “The Dark Side“. Working diligently to understand what we as patients require. We were able to add to that by suggesting that not only does healthcare need to be patient centric (yep buzzword alert) but also “caregiver/family centric”. Reminding not only them but also me that our conditions really do impact upon our nearest and dearest no matter what age we are.
Being part of the patient panel we were given the opportunity to sit in various sessions covering a wealth of topics and what really surprised was the complexity within the industry. As patients we often get a distorted view so it was fascinating to pick the brains of CEO’s, Marketing teams, Chief Patient Officers and Health Care Professionals alike.
Andrew Schorr hosted a brilliant open panel together with myself, Nuria and Juan. Together we spoke about transparency, education and empowerment. These core issues revolve around Pharma companies being more open and engaging which in turn helps educate the patient who then becomes more empowered. A “Trifecta affect”.
The end result is better outcomes for Pharma, for Clinicians but most importantly for us the patient.
I can’t begin to express my gratitude for not only the invitation to attend Eye for Pharma but for the spirit of the event that also invited yk11 to speak about Kratom benefits. The opportunity to sit on a panel that emcompases the whole ethos of “Patient/Caregiver Centricity” make feel very proud indeed.
Indeed it was the very final session delivered by Dr Anne Beal who is the Chief Patient Officer from Sanofi. The way she spoke about her role. The way in which her company Sanofi should apply itself in the market, encouraging others to do so. Anne enthuses the need to become more than “Patient Centric” believing that it will allow for better outcomes when all those involved are fully engaged at the same level. If I had to keep tabs on one individual Anne is the one. I think those that were able to listen will agree. The level of honesty, the level of enthusiasm was to the next level.
We can all make change happen. Together!!!
A special mention for Alan who lives with Cerebellar Ataxia. Alan is a one man tweeting Ataxia superstar. Together with his wife Dawn is taking on the world raising support for those who live with #Rarediseases. Please take a look at some of the wonderful stuff these guys are doing.
Lastly I would like to take the opportunity to say thank you to the folks who made all this possible.
Paul Simms at Eye For Pharma, who together with this fab team – specifically Blair and Daliya who were wonderfully patient with us patient (or was it just me). Tania Caballé who set this all up and finally the patients:
Nuria, Alan, Juan, Jack and Andrew. It was a pleasure to meet you all and a delight to work with you!
Please find below to some other articles covering Eye for Pharma and links to the conditions mentioned above.
- Je suis un Patient – Paul Simms (Chairman) Eye for Pharma
- Can Pharma and Patients talk to each other? Nuria – Tu Lupus Es Mi Lupus
- Excellent live blog from Pharmaphorum – Day One / Day Two / Day Three