A team of 18F and Presidential Innovation Fellows worked with the Office of the National Coordinator (ONC) to take a fresh look at patient's experience with their medical records and come up with concepts and directions to move toward next to help ONC fulfill their mission. 

We spoke to doctors, nurses, patients and medical records teams to understand the underlying needs and challenges around delivering care when medical records are scattered at separate healthcare institutions

“[waiting for records] slows down treatment. Are we going to have this person sit in a hospital for 3 days waiting for a cd? … every day in the hospital is an Adverse Event. ”

— Hospitalist
“Radiology tried to find records, a couple of weeks went by, called again, it just never happened. “


— Family caregiver

There is no single “medical record” in the digital world going forward

  • The notion of a single patient medical record isn’t really grounded in what we found. Patient medical information is fragmented in many systems, is duplicative and requires curation. 
     
  • Doctors and patients need specific information rather than the whole medical record
  • Trying to get the whole medical record actually aggravates the problem, as doctors won’t go through thousands of pages. 

Providers are often unable to get critical patient records and patients become conduits for the exchange 

  • The process for a patient requesting medical records is also broken, because it's extremely difficult and can require medical expertise. 
     
  • Patients often fail when they try to intervene and obtain medical records needed by the current clinician
     
  • Patient portals give patients the illusion they can help, but portals do not contain the clinical information doctors need. 

Health information in patient portals can be confusing without context

  • Portals do offer valuable transactions (appointment scheduling, refills, secure messaging), but health record/info transaction can’t be done (or don’t need you to do them), or are more nuanced
     
  • Portals have partial information, design for the patient
     
  • Portals are not the “online medical record”
     
  • People rarely use health portals
     

 

How can we make the process of requesting health information less complex and easier for patients and caregivers?
 

  • The medical request process is different for every doctor’s office with different expectations, information required and communication methods. 
  • Would a national standardized medical request form help? 
  • Would a national standardized process and expectations be helpful? Feasible? 
  • Could hospitals or insurance companies offer concierge medical request services for both doctors and patients? 


 

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How might we prioritize medical requests that have the most impact on patient health?

  • There are cases where delays in health information have immediate and urgent treatment impacts, often in urgent care and ER situations. 
  • Would it be possible to create expectations around a “Fast Track” system for urgent requests? 
  • How can weekend medical record request needs be better handled? This is a chronic cause of delayed care in hospitals on the weekend. 
     

How might we ensure incentives, policy, etc. is encouraging responsiveness to medical record requests for provider offices?
 

Our research seemed to suggest the penalties and fear around incorrectly sharing patient medical information outweighed the incentives for being responsive to requests from other providers. 

  • Just as CMS is changing reimbursement structures to support outcomes, can the same be done to track responsiveness to medical record requests? 
  • Could a policy change stimulate the market to make the exchange of medical information an important driver? 
  • Could reimbursement be tied to a Standard Level of Service (SLA) that providers have to meet on answering record requests? 
     
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From the broad research and early concepts that we created, ONC is moving forward exploring how to further incentive the sharing of medical records, support a more balanced understanding of HIPAA that emphasizes portability, and to continue to ground policy in the actual experience of patients and their medical records.