The Patient Data Access Initiative (PDAI)
Welcome to another edition of Riding in Cars With Researchers! I’m Dr. Jeff Kingsley and today we are going to talk about patient data. I’m talking to you, patients!
We are going to talk about how to get you access to your own data from research trials. This is an initiative that is gaining traction in Europe and in the U.S. I had the privilege of being invited to Cambridge, Massachusetts to the Pfizer Campus for something called the Patient Data Access Initiative (PDAI). It’s a group of six very large, prominent, pharmaceutical companies, along with invited physicians, research coordinators, and patients from around the U.S. and Europe.
We gathered in Cambridge to discuss this initiative and discuss how we can make this happen. Because we all believe that it should happen, and we all believe that it’s a good thing. We gathered to discuss what the value proposition is for patients. Would they care? Would they want their data? And how often would we do it – how often would we give patients their data? And would we give them all of their data?
Why should we give you, the patient, your data back after a research trial? There are 3 very prominent reasons:
A Better Sense of Your Health
You and your other physicians will end up with a much better sense of your health and your issues. Why is that? I’ve discussed in some of our previous episodes that in research we collect a much better record on you than your private physicians do. It’s the truth. Your private physician ends up with problem lists on you that all differ from one another. Your primary physician’s record shows that you have Type 2 Diabetes. Your endocrinologist’s record says that you have Type 2 Diabetes controlled with diabetic neuropathy. That’s much more specific. Your primary physician’s office and endocrinologist’s office both say you had a heart attack but that is the only diagnosis listed about your heart. But your cardiologist’s record says that you had a non-ST segment myocardial infarction – much more specific! And it also notes that you have a little bit of mitral regurgitation (an issue with one of your valves). And maybe has some information on your injection fraction (how well your heart is contracting). But those didn’t end up in your other charts. Why? Because doctors don’t talk to each other very much – we don’t share information with each other.
In research, we have an obligation to contact every office you deal with and get your record. And we don’t just get your records, we combine those records into a single research record. We decide which diagnosis is most accurate, and which diagnosis isn’t accurate, and we remove that diagnosis. We end up with a comprehensive problem list on you. We end up with a comprehensive medicine list, allergy list, and we do so much more testing to understand the state of your health and state of your other issues. We end up with a much better record on you. By sharing that with you, and with your permission, to your other physicians, we give you and those physicians a much better sense of your state of health.
Lower the Overall Cost of Healthcare
When you’re in a research trial, you get more labs, more EKGs, more physical exams, and more tests. But then when you go to your annual physical at your primary care office, and that person doesn’t have it, what are they going to do? They are going to repeat lab work on you, and repeat an EKG. That’s a waste. It’s a waste of healthcare dollars and a waste of your co-pays. It’s also putting you through unnecessary procedures.
Out of Respect for You
Patient autonomy! Patients should have control of their own healthcare records, as well as control over their own healthcare decision-making. Out of respect for you, we should be returning your data to you, so you have that control moving forward into the future.
The patient data access initiative – I am very proud to have participated in the inaugural meeting and I will continue to participate because I want to get your data back to you for these three very important reasons.
We are making a difference in the world! Research is changing, we are evolving, and we are improving every day. We will continue to fight that fight.
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