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Michelle Berg, VP Patient Advocacy with Abeona Therapeutics on the growing recognition of health literacy within the industry.

By Danielle Barron on Jun 22, 2016

What is the best way to provide patients with medical and scientific information in a way they can understand to increase comprehension? Can that consistent dialogue be maintained with the patient across the lifecycle? Michelle Berg, VP Patient Advocacy with Abeona Therapeutics, will speak at Patient Summit USA 2016 on the importance of guiding patients to trusted resources, particularly within the rare disease space. Here, she illustrates how health literacy is essentially a bidirectional conversation. Rates of health literacy may be rising, thanks to the internet and social media, but there is still a spectrum of understanding, she cautions.

Q: Has the importance of health literacy been sufficiently recognized in recent years?

With patient advocacy, it is still quite ‘young’ in the sense of its role within industry organization but there has been a very positive move towards generating more of this type of role in varying forms throughout the pharma and biotechnology space. This has been seen especially in rare diseases, because the rare disease population is quite large, collectively, but within that, you have an estimated 7,000-plus rare diseases. Just 500 have an approved or marketed drug or therapy available. That is a high proportion of people whose needs are significantly unmet or under-met. Industry is realizing that because there has been such a unique set of circumstances, systems and pathways, you really have to have a close interaction with the patient community and the foundations that provide support for them in order to fully understand how best to serve them. It is a positive in that it has started to be increasingly realized, but it is a developing role within industry itself.

My company is focused on bringing forth therapies for rare diseases, particularly those that impact children. Currently in our pipeline, we have four gene therapy programs, all of which are at different stages, with our lead program now at the clinical stage. The role that I play here with Abeona is primarily as a resource, providing bidirectional education about not only the resources that are available for the different rare diseases we focus on, but also to serve as an educator or source of information on topics such as what is gene therapy and how the drug development process works, for example.

It is a huge topic, particularly for parents perhaps who are just getting this diagnosis and everything is brand new; they have to become savvy and able to speak the language of this new disease. That’s not only from a medical perspective but if you have a therapy that is only going through the approval process or has just been approved, then you have to understand the regulatory language used, as well as the science.

Q: Health literacy rates have been historically quite poor. Have they started to improve in recent years?

There is a spectrum. Now with the advent of the internet and the wide raft of social media options out there, patients and their families are able to find each other more quickly, and communicate more easily, whereas 20 years ago, a family would have received a diagnosis and not known where or how to find anyone else in a similar situation. But it ranges from those with sophisticated levels of savviness when it comes to finding information and processing or understanding it, to those who are fresh and brand new, requiring a significantly larger amount of explanation and education. There is, of course, also a mass in between. Not everyone is able to come in at the same level. There is a consideration of geographical location – if you are somewhere that’s very distant from a research center or a center of excellence for a particular disease that you are impacted by, you are limited by the knowledge of your local treating physician, so that is also a challenge. The level of education also can mean limitations, as these complex rare diseases do not differentiate.

There is such availability of information now, but how do you know what to trust? I work closely with families and foundations to guide them to the right type of information and help them distil some of that. How do you know what is a trusted resource? How do you know what the takeaway messages are? I try to explain it in a way that they can absorb it and understand it and draw conclusions. 

"I’ll work with families and foundations to better understand the challenges, needs, and wants for their children which allows me to gain important insight for the team to aid in developing our programs. Their input is critical to our success and ensures we are on the right track and focused on what is most important for these kids and their families.”

Q: What makes the rare disease space different in terms of education when it comes to HCPs as well as patients and families?

Medical school can only cover so much and while they do address genetics and rare diseases, with so many you cannot go into the depth and breadth of all of them. Healthcare providers only know what they know, and they may not recognize a rare disease.

The diagnostic odyssey for so many of these families is so difficult, and it isn’t because their physician is unwilling, it is because they don’t have the training. Helping to educate HCPs that if you see some particular symptoms, to consider a particular illness. Networks of physicians are now cropping up, whereby a doctor can input a list of symptoms and other physicians with experience of a certain condition can make suggestions; hopefully, that will lead to earlier diagnosis.

Q: How can patient advocacy aid industry working within the rare disease space?

I use my role to help alleviate in any way that learning curve that patients and parents go through, however I can, whether it is serving as a resource or serving as an educator on the science or regulatory aspects. Helping people to understand the entire drug development process is also key, as it’s not always easy to grasp why things are the way they are, and wondering why some areas could be or should be accelerated. I also take information from the conversations I have with patients or parents and share that with appropriate colleagues at the company, because the worst thing we can do, outside of not doing anything at all, is to build something that nobody wants. These families are very eager to share their experiences, their desires, wants, or priorities, and it would be a huge missed opportunity not to take that information and apply it to our work.

It has to be a two-way conversation but I am also fortunate because I get to learn about all these different families and interact and work with many of the different patient organizations. This allows me to hear and learn first-hand what is important and what is challenging, as well as the differences a particular therapy can make.

That’s why it is so important to have that bi-directional communication and education and then relay that to colleagues who are working at the bench and so removed from that community. They will just read it in a scientific paper, or perhaps a news story, but me relating the information in a personal way to them has the potential to make it more motivating and inspiring. This brings life and meaning and dimension to the scientific information that a journal article might not provide.

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Michelle Berg, VP, Patient Advocacy, Abeona Therapeutics, will present on “Speak with health literacy in mind” at Patient Summit USA 2016 in Philadelphia October 10-11, 2016.