Patients Helping Patients Blog
What Do Patients Want From Pharma?
That is the question that some of the ePatients invited to the Eyeforpharma conference that took place in Barclelona from March 24th to 26th answered while hundreds of executives from the pharmaceutical industry were present.
The conference had sessions dedicated to patients (Patient Engagement Track), that featured ePatients like the Founder of Patient Power and two time cancer survivor, Andrew Schorr (@andrewschorr) and his wife, Esther, Jack Whelan (@jackwhelan), diagnosed with a rare type of blood cancer (Waldenstrom Macroglobulinemia), Nuria Zuniga (@tulupus), a lupus patient, Mike Young (@elgringoinspain), a type 1 diabetic, Juan Fuertes (@juanfuertesgull), representative from the Asociacion Nacional de Hipertension Pulmonar, and Alan Thomas (@alanroygbiv), an ataxia patient. [Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum.]
“To tear down the walls between the pharmaceutical companies and the patients”
After her participation in the conference, Nuria Zuniga explained that even though pharma is trying, the companies are still not focused on the patient. “Putting the patient at the center of an organization (no matter what kind of organization) means talking WITH the patient, finding out their personal experience and not just seeing the illness as a set of symptoms and test results… The illness is much more than that, and it affects both the patients and their families in all aspects of their lives (psycho-social, workplace, home).”
Nuria believes it is necessary to “tear down the walls” that hinder the relations between pharma and patients, and that both could do great things if they work together. But the activist is also critic with patient associations who, according to her, are not always up to the task. “We ask pharma to collaborate, to work together for the patient, when some associations seem to have forgotten that their focus should already be the patient. You can read Nuria’s blog to find out more about her thoughts on the conference.
Mike Young also advocated for open dialogue between patients and doctors with pharma, even though he explained, “The heavy regulation hinders the collaboration.” Mike is a good example of an ePatient: active in controlling his illness with the help of modern technology. With a smartphone and a glucometer, he controls his diabetes. Some of the apps he uses daily are:
- Calculater to estimate the dosage of insulin he needs to inject
- MySugar to control the evolution of his glucose levels
- Pedometer to record his exercise
- Medscape to keep him updated on medical news
Mike believes that the majority of medical professionals are not on the same level as the ePatients since “they don’t have enough digital knowledge or drive to stay updated with available technology.” You can read the summary that Mike wrote on the conference on his blog, Diabetes in Spain.
Juan Fuertes Guillen, a patient representative with pulmonary hypertension, explained that empowered patients have better health and that “they are good for the health system”, and that both industry and patients must make an effort to “get to know each other better.” Fuertes also said that the patient associations are economically dependent on pharma and it might be good to find ways to change that.
“Pharma: Don’t think only about the patient, think also about their family”
Andrew and Esther Schorr’s talk centered around the importance of the caregiver. They explained that pharma should move from being centered only on the patient, to being centered on the patient’s caregiver as well. The couple talked about their personal experience as a family when Andrew was diagnosed with his first cancer in 1996 (Chronic Lymphocytic Leukemia) and the second cancer in 2011 (Myelofibrosis).
Andrew put out a call to action to pharma industry executives to listen to what patients have to say in social media, and also to work on their reputation. A Patient Power survey showed that the majority of patients do not trust the information that the pharma industry displays on their websites. Andrew believes that pharma should finance independent educational programs. This is the best way to help patients and build up credibility for their industry.