What Happens to my medical information? Where is it?

In this week’s MedPage, a medical information website, there is a post, by Dr. Leonard Lichtenfeld, about sharing personal health data. He was asked to sign a consent for information sharing that may have essentially taken away from him any control over how his personal health or Protected Health information (PHI)[1] could be shared.  I too had a screening colonoscopy and did sign the consent, because I thought it was a necessary evil of getting the procedure done. This unfettered sharing of Protected Health Information (PHI) may be frightening. On the other hand, not sharing information may hinder delivery of optimal care. Tomorrow, a relative of our family is going to a new physician for an evaluation. She has been getting care for urinary and skin infections at a urgent care center near her home. One of her caregivers asked me whether the new physician could access her records to see whether any of the meds that she is getting may relate to her recent health status deterioration. This brought up the question of sharing health information and how it happens, or doesn’t.

When I was in training, each person who saw a patient did a History and Physical (H&P). The format was fairly well prescripted. [2]After doing my H&P, I went to a room and wrote my findings on paper that was incorporated in the hospital chart for that patient for that admission. We then wrote progress notes daily or more often. After the patient left the hospital, I was required to dictate a Discharge Summary that hopefully went to the PCP and/or referring physician. All the paper from that admission was bound into a hospital chart some of which often ended up being over a foot and a half tall.  Many times, when I was seeing a patient, and asking the same questions again he/she would say something to the effect of, “Isn’t this all in my chart?” or “Get this from my chart”. I often would reply, “Yes some of it is, but I just want to be sure that I get it all right”. In the early 1990’s, my partner and I began to keep much patient information on our desktop computers in a flat file database (AppleWorks®)[3]. Our computer records migrated to disks that we would carry home, then to a lap top and then to our own intranet site. Having these data available made phone calls easier, and often allowed us to rapidly answer consultants questions. In the mid 1990s, we were introduced to the EPIC(r) EMR. It seemed wonderful, even if it slowed us down a bit. We were able to access our complete records immediately in the office (no more asking someone to “pull a chart” from the storage area), from the hospital when we were making rounds, and even from home at nights or on weekends. Having the chart available anywhere at any time, allowed us to provide more comprehensive care. We felt that, while it wasn’t perfect, this was an improvement in  the way we kept patient information for ourselves. Patients, themselves,  couldn’t access what we had though.

In his State of the Union Address on Jan 20, 2004, President Bush proposed computerizing medical records to help “avoid … medical mistakes reduce costs, and improve care”[4]. There was little other substance at that time. However, later that year his White House page proposed an ambitious goal that “Within the next 10 years, electronic health records will ensure that complete health care information is available for most Americans at the time and place of care, no matter where it originates. Participation by patients will be voluntary.”[5]

The EMR was supposed to help us share information between health care providers more easily. To date this hasn’t happened.

2009 brought ARRA[6] and HITECH[7] to help with info sharing. Health Information Exchanges were supposed to allow sharing of information between physicians and other caregivers and between hospitals and physicians. There was a flurry of activity to try to establish HIEs in cities and States. As of December 2015, none of these have really succeeded. This is at least in part because of inertia and also because there appears no incentive for any providers to share medical information.There is no financial advantage to having institutions/systems share information. In fact, one motive not to participate in an HIE might be that keeping the information confined to one hospital/system will encourage the patient to come back to that site(s) for care. There are no other incentives for physicians or systems to share patient data. A disincentive the privacy issue (often called HIPAA[8]). Sharing PHI is restricted by Federal Mandate[9]. At the minimum, someone has to sign a consent or release for information to be shared (Dr. Lichtenfeld didn’t sign a blanket release).

Equally important, there are almost no data supporting HIE use in decreasing healthcare costs.

So, where are the caregivers for my relative left? To get the information from the convenience clinic to the new provider will require she, or a person with her Power of Attorney to go to the clinic and sign a release of medical information. Hopefully the clinic will then release the data about her care so that any potentially important information can be shared with the new physician group that will be evaluating an entirely different aspect of her illnesses. It is unlikely that this information will be electronically available.

For the who are inclined to be more proactive, keeping a Personal Health Record (PHR) on a mobile device[10] should allow better continuity of care. The PHR has the potential advantage that individuals can keep records themselves and can then allow which providers can actually access their PHI. There is a website that can help us all understand some of the issues on PHR activities[11]. Alternatively, many hospitals and physician practices have a patient portal that allows patients, or those designated by patients, to access most, if not all, of the data that exist in that provider’s EMR. These data may then be shared with other providers.


[1] PHI is defined in HIPAA (see below)
[2] In the 1970s the way that we acquired and recorded information was modified by Larry Weed:  Weed, LL: Medical Records that guide and Teach; N Engl J Med. 1968;278:593-600.
[3] This was in addition to our charting in the office paper chart.
[4] State of the Union address, published in Washington Post (http://www.washingtonpost.com/wp-srv/politics/transcripts/bushtext_012004.html)
[5] http://georgewbush-whitehouse.archives.gov/infocus/technology/economic_policy200404/chap3.html
[6] American Recovery and Reinvestment Act of 2009
[7] Health Information Technology for Economic and Clinical Health – a component of the ARRA
[8] Health Insurance Portability and Accountability Act (Kennedy Kassebaum Act of 1996
[9] history of Kennedy Kasselbaum?)
[10]  There are over 7 potential PHR APPs:

   1.    Microsoft HealthVault (https://www.healthvault.com/us/en)
2.    WebMD Health Manager (http://www.webmd.com/phr)
3.    My Medical (http://mymedicalapp.com/)
4.    Capzule PHR (iOS only)
5.    iBlue Button (http://www.ibluebutton.com/)
6.    NoMoreClipboard (https://www.nomoreclipboard.com/)
7.    Track My Medical Records

[11] https://www.healthit.gov/patients-families/maintain-your-medical-record