In a Pharma Talk Radio interview, Marc Boutin – Chief Executive Officer of the National Health Council – shares his views on what partnering with patients means. “Partnering with patients in terms of medicines development means starting with the patient’s perspective. While the science is incredibly important we need to understand the problem we hope to solve from the patient’s perspective.”
As a medical doctor who’s come to the pharmaceutical industry, Dr. Paul Robinson has a first-hand perspective on what better patient involvement means. He shares his thoughts on what needs to be done and opens up about his personal goals, saying,“I want us to develop good medicines. I want my colleagues who are prescribing to be able to prescribe something that patients appreciate. We need to give the doctors the tools that answer the needs of the patients.” Dr. Paul Robinson is the R&D Director for EMEA Region at Merck Consumer Healthcare.
Dr. Lode Dewulf, VP and Chief Patient Affairs Officer at UCB, discusses the series of changes that need to happen in the healthcare system, linked to patient engagement.
Dr. Dewulf argues that in the case of chronic diseases, patients themselves have a strong influence on the outcome of their diseases, and are therefore in a very responsible position, saying “If I don’t change my diet, if I don’t change my habits of working, of life, of sports, then even the best doctor and the best medicine will not have a big impact on how my health evolves over the years.” However, this level of responsibility is not reflected in traditional interactions with medical professionals, as “most of the medicine establishment is still organised around a very quick 10 minutes visit in which…[the] doctor decides [what] you go home and do.” Additionally, in general the needs of patients are not being fully considered “by people developing medicines and in many cases, by the whole treatment system. It’s all still very medically driven: what the doctor thinks is right, is given to the patient.”
“There seems to be a big commitment towards engaging patients but that work is still happening in a fragmented way, in different parts of the world”, says Nicola Bedlington, Secretary General at European Patients’ Forum.
The challenge is to ensure that patient engagement happens in a strategic, structured and coherent way. There are many separate projects around the world tackling this. One of them is EPF’s own project the “European Patients’ Academy on Therapeutic Innovation (EUPATI)“ , which provides the education, the tools, the materials to educate patient representatives and the lay public about all processes involved in medicines development.
Healthcare is not just about medicine, but also about the way we live our lives.
“Nobody wants to be defined by their disease”, says Marilyn Metcalf, Senior Director, Benefit Risk Evaluation at GlaxoSmithKline.
“Each of us is a patient at some point, each of us is a caregiver once. We all have family members who are patients too. Healthcare is a much broader issue. As scientists we are taught to be more objective. As social scientists, we know that any kind of observation can affect the whole environment. Much more so with patients. As human beings, we are all social. So we need to have a much more human interaction with patients and see them as whole people.”
In the case of chronic diseases, often treatments focus on promoting length of life, longevity. In the video interview below, Marc Boutin, Chief Executive Officer at National Health Council, challenges this pattern and explains why it is important to start looking at how patients live with the disease instead:
“You may think that the symptom that is most important to one disease group is pain. But when you ask people with that condition, you find out that what’s really most important to them is fatigue. So if companies are shooting at the wrong symptom, they are making treatments that are not relevant to patients.”
“About 85% of all investments into research are being wasted by asking the wrong questions “, says Jan Geissler, Director at European Patients’ Academy on Therapeutic Innovation (EUPATI).
The issue today about research is that there is a lot of waste. Research is being done without having the true needs of patients in mind.
“Patient involvement” is the buzz word of the decade in healthcare. In this interview, Tony Hoos, the Head of Medical for Europe at Amgen talks about the need to embrace a new societal contract, one in which informed patients can and should have a meaningful say in the drug development process.
“If I had a serious condition, I would want to have a say in my own future. I would want to really understand what my data is, what my options are and I would want to take an active part in shaping my future therapies and ultimately my fate” , he explains.
A new coalition launched this week 23rd of October and is urging all stakeholders in the medicines research and development pathway to work together to take a truly global approach to patient involvement.
Significant progress is being made which is changing the face of patient engagement; however there is still a need to build on this to develop a universal approach. The process of developing new medicines is essentially global, but today the many initiatives seeking patient engagement and involvement in this process are not harmonized. This lack of harmonization has been identified as a critical challenge to effective patient involvement. The Patient Focused Medicine Development (PFMD) coalition has been established to move beyond identification of barriers towards practical solutions, and is calling on all stakeholders to get involved in order to catalyze global patient engagement.
The purpose of medicines is to improve the lives of patients. Stakeholders involved in the development and lifecycle management of medicines agree that more effective patient involvement is needed to ensure that patient needs and priorities are identified and met. Despite the increasing number and scope of patient involvement initiatives, there is no accepted master framework for systematic patient involvement in industry-led medicines research and development, regulatory review, or market access decisions.