Journalist and patient advocate Andrew Schorr (@AndrewSchorr) founded the Patient Empowerment Foundation in 2015. He has been empowering patients and care partners for many decades through Patient Power, the company he co-founded with his wife, Esther (@EstherSchorr1). They moved to Barcelona (Spain) in 2011, where they lived for three years. It was during this time when they clearly saw a need for patient empowerment in Europe and around the world.
Andrew, what were your goals when you created PEF?
We founded the Patient Empowerment Foundation (PEF) to be a catalyst for education and empowerment for patients globally. There are multiple patient groups that maybe don’t use communication as effectively as they should. The idea is really to expand education and empowerment, particularly in Europe, but in other countries as well. We want to make sure that wherever they are, patients are informed and empowered – that they feel more in control of their critical healthcare decisions.
As you said, there are many groups working in Patient Empowerment around the world. Where does PEF fit in this scenario?
There are many organisations for specific conditions but often they don’t work together and also they don’t leverage communications technologies, particularly the internet, as well as they should. The idea is to be a catalyst for better communication and working together with the different groups. Because the reality is that there are many patients who are not reached by these groups. There needs to be broader communications, broader awareness, and broader accessibility to timely and useful information.
Which are the main goals of PEF for 2018?
To expand our content library to include more languages for certain serious illnesses -particularly cancer. We also want to pilot large-scale broadcasting from medical conferences in partnership with patient groups from specific countries. PEF will facilitate broadcasting in partnership with patient groups and in the language of the people they serve.
Apart from cancer, what other conditions are important for PEF?
The way we work in the field of cancer can be applied to many other serious conditions, such as multiple sclerosis, Crohn’s Disease, psoriasis, Parkinson’s, rheumatoid arthritis… Those are some conditions but it also could be applied to various rare conditions as well.
How has patient empowerment changed since you were diagnosed with your first cancer?
It has changed a lot, but it varies by countries. I think patients and families, particularly because of the internet, are beginning to understand that there may be changes in diagnosis and treatment of their illness that they need to know about. They need to actively seek out the best doctor to get the best possible care. There is a risk that if they don’t do that, they might end up not getting the very best treatment available. If they become empowered – take an active role in their own healthcare decisions with their medical team – they may do better. Sometimes it is the patient who can be very engaged and sometimes is the family that wants to help their loved one and looks for help. I think patient empowerment is increasing but it varies by culture and by disease.
You are a speaker at many international conferences. Do you think the voice of the patient is being listened to in healthcare more than in the past?
I think that is very variable. My precise message at the conferences where I speak to healthcare stakeholders is: Listen to patients. First of all, companies want to develop a product or a service that is profitable. Patients are the key stakeholders. I believe many of these companies did not recognise that for a long time and they were working without insights from those who can benefit most from treatment advances. This is now changing a bit and it needs to change a lot more. I spoke about this at the Precision Medicine World Conference in Silicon Valley a couple of weeks ago. In precision medicine there are companies developing new medical tests, and very specific treatments for various diseases based on genetic profiling. They are very focused on the science and the investment. But if they talk to the patient early on they will better understand their needs. We are not there yet, but there are companies, particularly some big ones, that have patient advisory boards and are listening to patients. But there is a long way to go.
You have worked with pharma for years but many patients distrust pharma. Do you think there is a change of mentality and pharma is really becoming patient centric?
Some patients mistrust pharma because they think they think pharma is only after the money, and this gets a lot of media attention. The cost of drugs – especially new cancer drugs – is very expensive. Certainly, medicines are expensive. Somebody invested in developing these drugs and hope for a return on that investment. I think we need to understand the value of what is provided. Patients should have a closer dialogue with pharma and others in the medical industry. If we as patients can help these companies develop products faster and more aligned with our needs, the hope is that this would lower the cost.
Finally, what would you like to do when you retire?
I don’t have any plans to retire because of the tremendous mission Patient Power has. I am living with two cancers, doing well and benefiting from the latest medicines. Fortunately, there are other people that also believe in this idea of educating patients and family members, so I am not alone. What I am trying to do before I retire is bring people together that can accelerate patient empowerment and carry on with this mission.
*Teresa Bau, Communications Director at Patient Empowerment Foundation.