Patient Ownership of Records

Patient ownership of medical records is a big push in healthcare. Owning medical records leads to more ownership of care, informed decision-making, and accountability (whether real or perceived). Initiatives such as OpenNotes are finding success in sharing complete medical notes with patients.

They are also building a body of evidence in support of sharing medical records. Patients like accessing medical records. Their privacy concerns (a third of patients have them) seem to be trumped by their desire to view their records.

I’ve had discussions about patient access to medical records with my physician wife. Her take — and this is not uncommon when this topic comes up with physicians — is that she might document differently if she knew the complete record would be accessible by her patients. She’s had some strange and disturbing events with patients requesting access to records that involved mental health issues, personal safety concerns, and potential legal actions. Because of all these experiences, she has reservations about providing full access to her patients.

Why do docs push back?

The assumption is that patients / consumers own the data because it is about them. The reason for the hesitation on the part of physicians is that medical records, at least as they have existed until now, are seen as internal company documents. Companies that document interactions with customers and partners would never share those notes with those same customers and partners. It’s not an apples-to-apples comparison, but that’s how most physicians I talk to view their EHR notes.

How far do we go with patient ownership of data?

I was reading in MIT Technology Review about a new tool from University of Illinois that will potentially allow patients to selectively redact parts of the medical record. The tools is based on "machine-learning analysis." It’s a cool concept that could give patients control over which parts of their medical records are shared. This is powerful for individuals and could be used for their benefit without detracting from their care.

The death knell for the above referenced tool may be this statement: "A clinician would get advice from the technology on how to amend the record to ensure that this occurs." For this to work and be used, it needs to be seamless without adding to physician workload. 

But the actual tool isn’t the point. It’s the idea of complete patient ownership of the medical record and the parts of it they want to share.

Is an incomplete record better than no record at all?

In the above article, John Halamka is quoted as saying, “As an emergency doctor, much of the time I have to fly blind. If I get something, it’s a whole lot better than getting nothing.” I agree wholeheartedly that something is better than no nothing, but does “incomplete” equal “inaccurate?” If people selectively choose to share parts of the medical record, there is risk associated with sharing an incomplete record. An incomplete record, without any indication that it is incomplete, is an inaccurate record.

The article states that giving individuals more control is the only way they would be willing to share any medical records at all. I’m not sure that’s entirely true. People who want to share records will share records. Making it more complex is not necessarily going to increase sharing or utilization of medical records by individual patients.

Is it patient ownership or shared ownership?

The OpenNotes tagline is "patients and clinicians on the same page. Allowing patients rather than clinicians to selectively share part of the medical record is not shared ownership. It does not put providers and patients on the same page.

Ultimately, responsibility for health and wellness is going to fall on the patient. Responsibility for care is going to fall on the provider. There is room for collaboration in both health and care, but clinicians take on the responsibility and accountability for care. The decisions clinicians make and the information they use to make those decisions have a potentially negative impact on reimbursement.

I see legitimate instances when a patient would want to exclude some part of their medical record from a provider. Many of those instances would not affect care in any way. However, I’m struggling with the idea that providers can’t selectively withhold information in the medical record while patients can.

A parallel might be education. Would we be OK with students owning their records and selectively sharing them with teachers and administrators when they go to a new school?


Travis Good is an MD/MBA and co-founder of Catalyze. More about me.

  • On either side, patient or provider, this part rings truest to me: “An incomplete record, without any indication that it is incomplete, is an inaccurate record.” I’m trying to better understand reasons patients or providers might be opposed to full patient-data disclosure, but so far I can’t help but feel like complete transparency would be paramount for the best care.

  • We already are OK with students sharing their records. Hence the corollary Ryan draws between opening up student records in the 70s to medical records now, in his TED Talk:

    Schools can still request full records so they don’t have to rely on students transporting their own data. But students still have the right to know their own records. There’s also less utility in student data than medical data—there aren’t many use cases for student data outside of schools knowing whether to graduate a student or not—so this may not be a perfect analogy.

    A better analogy is banking records. You have the right to your own financial data + there are many ways you can make your life better by doing intelligent things with that data. You can improve your credit score, find better checking accounts, consolidate loans more wisely, see your spending patterns to identify areas of improvement, etc. Same with medical data.

    Doctors not sharing patient data with other doctors is different than doctors not sharing patient data with the patients themselves. Patients and doctors have different needs with the data. EMRs solve the former and are being bent to solve parts of the latter <– this is why we're seeing innovation for consumers. Just as doctors couldn't just extend PHRs indefinitely to act as their EMRs, consumers too need their own solutions, built for them from the ground up.

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