30 second survey: would you share your clinical data publicly?

Hi there—my name is Paul, and I’m one of the founders of PatientBank. Recently I’ve been interested in exploring the pros/cons of sharing your clinical data publicly. Have any of you thought about it? If you have 30 seconds, I’d really appreciate hearing your opinion on the survey below. Thank you!

Here’s the survey: https://goo.gl/forms/iyCnrEkCaI4UI8YD3



Done, and PatientBank is a cool idea. I don’t have any personal interest in it, but it seems like it could really help people in a potentially stressful time when a medical issue arises.

Thanks @danwich! Out of curiosity, what features would make you personally interested in it? We’re very much focused on helping pull medical records really easily right now, so I understand how there isn’t a need for someone who already has their records, for instance. Is that the case for you?

Basically yes, I already have access to the records I’m interested in. But I’d definitely find your service useful if I had a complex medical care history, a newly-discovered condition, etc.

Paul- How does this work with older medical records? Although I would like them, I don’t even try to track down my older ones, more than 5 years or so, because I am uncertain which states and which doctors keep them for how long. Is there a service that finds medical records the patient may have forgotten about new or old? I’ve been to hospitals and doctors when I was in college, and even more recently that I have no idea what the names were. I was under the impression that at least some of this information was findable by insurance companies trying to prove you have a pre-existing condition, so it should be findable by me too.

All makes sense—thanks for the explanation, @danwich!

Great question, @Emily_Porter! Figuring out where a person has been for care is very difficult. And it’s something that we haven’t tackled effectively yet. Insurance companies will know which offices/doctors have submitted claims for a given patient, assuming you haven’t switched insurance. And some e-prescription companies will be able to get a list of prescribers for you. But neither make that information readily available.

I’ve found that most doctors/hospitals keep records for 7-10 years (though some much longer), and we’ve made a policy that actually refunds users for requests where their records weren’t found. But it’d certainly be great if we could figure out upfront which offices had a record for a given patient without having to request from many.

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One feature I’d like to see, if this is not already something you’re planning is the option to select which records or which types of records to share publically.

Thanks @saw2112! That’s a great suggestion.

@pfh, a few questions for you about your site. (Note, if you prefer these be emailed or sent through your contact form instead of posted here, let me know).

  1. I see that your site says that requesting multiple records from the same facility will only be charged once. I recently learned from a lical hospital that they maintain (and you need to individually request) seperate records for each outpatient specialty even if you see one of their staff/hospital-employed docs. Would this still count as a single facility fee-wise or no?

  2. Does this work for labs, imaging studies, etc, or just physicians and hospitals?

  3. If one opts for receiving the record through your digital download, is there a dashboard or UI for viewing these, or do we just get a link to a pdf?

  4. Do the requests you send get marked as “for personal use” (in which case, many offices and facilities charge you) or as “for sharing with a medical provider” or “for continuity of care” (in which case, they don’t)?

  5. If requesting multiple records from the same facility (i.e. mine and my father’s and my brother’s, for example) does that count as one facility/request cost-wise or multiple?

  6. When requesting records for a deceased relative, do we need to provide you or the facility with any specific proof?

  7. Do you follow-up with us to see if records were received if they were requested to be sebt to us directly? If they aren’t received, do you follow-up with the facility and/or re-request records? Is there any additional cost?