On Tuesday, we talked about the limitations of static patient portals, which hopefully will soon be going the way of the dinosaur. But not soon enough.
In our work to help patients get all of their medical records related to their cancer diagnosis and care, we have noticed that, on average, cancer patients need records from three hospitals or medical practices. When patients are dependent on portals to get at least some of these records, they have to remember usernames and passwords for each portal. Yes, convenience drives many of us to try to use the same username and password for practically everything — but sometimes username and/or password requirements make this impossible.
Patients with cancer frequently seek second (and sometimes more) opinions, which often requires them to send their records in advance of the visit. For a patient in portal hell to even be able to send a doctor their medical information for a second opinion, they would have to download the portal information (if that’s even possible); potentially separately submit a request to the HIM or Records Department for supplemental information not in the portal (for example, images, genomic test results, and notes); and then somehow package it to share with a new doctor.
One doctor we requested records from (whom we had to call multiple times just to confirm receipt of the request) refused our form twice and demanded the cancer patient come in-person to fill out the request form. After the patient drove to the medical practice and reaffirmed his desire and legal right to have the records sent to us, the patient was told the practice would only send paper records to the patient’s home address, which is exactly what transpired. Wow, that’s helpful - reams of paper that an oncologist then needs to sort through before being able to give a cancer patient an informed treatment recommendation.
And all that back and forth took just shy of three agonizing weeks.
As we said on Tuesday, federal policies are heading in the right direction on this - but we just wish the needed improvements wouldn’t take so long!
And on the issue of time, here’s another issue that concerns us. Hospitals and physician practices don’t keep medical records forever - and particularly for paper records, most of which were never scanned into electronic format. Files older than 10 years may not exist anymore - or may be housed in offsite storage, where it takes even longer to retrieve them. Many cancers are slow growing, so past history can be critical to understanding a cancer patient’s comprehensive health history. And the past can be key to understanding why some individuals develop cancer in the first place.
One of our cancer patient users had asked us to help her retrieve information from records created before she was diagnosed - and we were told that those records had been destroyed. Her reaction: "Until I was diagnosed, I had no idea how valuable my health records could be and now the clinical record of all of the seemingly random issues I had over a decade ago are gone. With no known genetic variants, my health history could have been critical in understanding why I was diagnosed with cancer more than twenty years earlier than the average breast cancer diagnosis. And my health data could be critical in helping my children and others understand their potential risk. All that rich data - just deleted.”
Time is not our friend when it ticks away while patients in need await their rightful health data. Ciitizen will keep working to make sure cancer patients have a way to get all of their health information, digitally, in one place, in a way that is understandable and efficiently shareable by them, for nth opinions or whatever purpose is important to them.