Placing the power of health back with the patient

Lessons from eyeforpharma’s 2011 Patient Adherence, Communication and Engagement Summit



Last month, Philadelphia played host to eyeforpharma’s 8th annual Patient Adherence, Communication and Engagement (PACE) Summit, where thought leaders from across the pharma space discussed the latest innovations and breakthroughs in patient engagement. 

After months of anticipation (and a few sleep deprived nights) the summit arrived, and as the initial morning caffeine buzz and business card swapping had ended we all took our seats, ready to learn from our peers in patient engagement!

The patient voice was a focal point of discussion, with key patient advocates and patients on hand to share their perspectives. I believe thatin every aspect of healthcare it’s vital to have the patient voice represented- which is why I was keen to involve Jeanne Barnett in this project, founder of cycticfibrosis.net. This online platform has allows patients with Cystic Fibrosis (CF) to seek answers where pharma and physicians cannot. It also enables the patient to share of stories, gain expert advice and find out about clinical trials for which they’re eligible. Lauren Brenneman, a member of the site, joined the summit to tell her story sand how often the industry has failed to meet her needs.

Breneman began by taking us through her typical day, which took the room by surprise.  Some members of the audience awkwardly shifted in their seats in the face of such an open and vivid explanation of a patient’s condition.  Getting close with patients was a main theme of the event, but through the voice of a patient we wanted to highlight the importance of being comfortable with them too. This point later became an important area of debate, sparking discussion and conversation throughout the two days.

Through her explanation of how CF affects her family, it became clear that pharma could be missing an opportunity to get closer to patients at the point of diagnosis. “Diagnosis is the point when the life of a person changes dramatically, and when families need hope and support learning to adapt to a disease” Brenneman said.

Building programmes from the diagnosis phase onwards- through an interactive two-way platform, could be a solution. At the same time one of the common observations from patients like Brenneman is that the very people providing her medication don’t seem to understand the condition beyond the chemistry and list of symptoms.

 “It seems the marketers do not know about the disease they are selling. If you really look at how a patient does something, for example nebulizer cleaning, they could learn how to design their products better” continued Brenneman. Those in the CF community, most of whom diagnosed at a young age, have remarkably few interactions with pharma, with even a pro-active patient like Brenneman engaging with only two companies on a very transactional basis. Like many others, she does not view pharmaceutical companies as organisations that can help support her daily life or affect how adherent she is to treatment.  So even with all of the positive outcomes data and re-filled scripts, the industry still seems to be missing out on a crucial element…engagement and relationship building. So what’s the next step?

Those at the eyeforpharma summit discussed next steps for realising this opportunity

Society as a whole is more educated than ever when it comes to health.  The amount of information available online in a user-friendly format is vast, and online communities like cycticfibrosis.net and PatientsLikeMe enable patients to have more control in their care by interacting with others and sharing experiences. Lauren sends her doctor emails the night before an appointment, a system they developed together to ensure Lauren was getting the answers she deserves.

Chris Preti, Vice President Patient Engagement, GSK gave his insight into this emerging patient-physician relationship, “Patients who are involved in shared decision-making with their providers, and who understand how to manage their health achieve better outcomes”,  therby supporting the movement towards  more consultative healthcare decisions and improving health outcomes.

“Patients are looking for simple, personalised health solutions from a trusted, respected source “continued Preti. Creating effective communication platforms would be invaluable, but they cannot be achieved as part of a marketing campaign or with any kind of commercial agenda. Credible partnerships need to be made across pharma to host these kinds of platforms, allowing open communication between pharma, patients and physicians. This is an opportunity for pharma to take pro-active steps in getting patients to see pharma as a support channel and to respond more positively to adherence communications they receive after they start a certain treatment.

Patient empowerment, another issue raised at the summit clearly remains a key challenge in the industry. “ I accept I’m in control of my own care, and receive support from my physician, family and even my community, but the responsibility is my own” said Breneman. Although patient empowerment is the holy grail of adherence, a surprising amount of companies don’t seem to be address this effectively.  Flashing lights, easy to open pill packets, nurse calls and text reminders, although effective should be seen as the foundation of adherence,  the nuts and bolts that facilitate treatment options. The real future of patient adherence though that emerged at the summit is getting patients to accept that their health is in their own hands… literally.

Rebecca Burkholder who is part of the National Consumers League medication adherence campaign showed the audience a clip from the “I will” commercials, currently airing across the USA. The commercials encourage patients to realise that if they take their medication as prescribed “they will” be able to do things they would otherwise be unable to. This is the kind of angle that  everyday people respond to is a step in the right direction in placing the power of health back with the patient.