October 29, 2018

Patients, Data, Care, Research

Patients, our health information, and better care are in my email this morning. 

I was very much pleased to get an email from a specialist's office. It not only invited me to use their patient portal to manage my relationship with the office, they actually set up an account and gave me a one time use password. 


This is opposed to the deal at my primary doctor. I had a portal account there. It was great. I could see all the reports and letters other specialists sent about treatment.  For example, once I read the details of a specialist visit before we had the conversation that was written up. That was a little too proactive. I fired that doctor later in the day when we had our appointment.

My primary doctor's practice got bought up by a rapidly growing hospital system. My portal was closed pending a change to the new system's patient experience. Closed, not converted. Way to go Jefferson - quality care. And  - I have to go into the office to apply to join the new portal.

Also in my email today, Faster Cures aka the Milken Institute, sent a link announcing "new initiatives to engage the private sector, strengthen global partnerships and harness the power of data to save lives." Their stated priorities are:

  • Advance policies that break down regulatory and other barriers to getting scientific advances to patients more quickly;
  • Identify incentives to increase private sector investments in biomedical R&D;
  • Build global communities that expand capacity to treat disease;
  • Put patients – and their health data – at the center of biomedical research and analysis.
They go on to say: 
"Groundbreaking cures require access to, and analysis of vast amounts of health data. Researchers face obstacles to collecting these data because medical providers often fail to share information with patients, or because patients distrust a system that does not explain how the data will be used or ensure its privacy and security."  - (Emphasis added) 

The press release goes on to announce the new board of very impressive medical providers  - doctors, insurers, business people. One has a Nobel. That is impressive! 

While all of the very impressive people are at times patients - none is at the table with a portfolio explicitly representing patients. So who is gonna, "Put patients – and their health data – at the center of biomedical research and analysis?" Ya know - so that patients trust the system. 

Feels like the - I need to come into the office and apply - idea. Patient access as an afterthought. Maybe while we are there, you can address the distrust the system part too. Ideally in something other than an impressive if unreadable terms and conditions page.  

In fairness, I think the Milken Institute is doing good stuff. I just think it would be better if they could figure out how to do what they say is a priority - Putting patients at the center or at least in a seat at the table. 


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