Digital Health Information in the Doctor's Office

  • How do you use digital information to better your health?  What is digital health?  What are ePatients?  Do you want or need doctors to join me in the digital health world?

    Each of these questions has the power to conjure copious amounts of discussion, debate, and documentation.  So I will be tackling the topic in a series of posts. 

    When I think of digital health, two main categories come to mind.  Information online and information in the clinical setting.

    If you are reading this, then you are a consumer of digital health information.  Cool, huh?  It is digital because we are online, on the internet, using technology such as a computer or mobile device for access.  I call you a consumer because you are consuming the information, not that you are buying the information.

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    Any person who reads information online related to health - whether from company websites, government agencies, non-profit patient advocacy groups, patient forums, etc. - is a digital health consumer. 

    Some patients may have a digital health relationship with their physicians, although they are in the minority.  My doctors and I do not have a direct digital health relationship, ie. we do not use email for communication, and I’m fine with that.  Even if your doctor doesn’t do email, he/she may use digital health information in the exam room. 

    Digital Health in the Doctor’s Office or Hospital

    When I first met my rheumatologist in 2006, she carried a PalmV.  During our appointments, she would quickly pull up relevant information on her portable mobile device.  She was likely using the encyclopedic information provided by Epocrates, a company which now has more than 65 medical apps available for patients, consumers, professionals, and the curious.  My rheumatologist has moved to using her iPhone during office visits.  She is a user of digital health information.

    Although my rheumatologist is open to using digital information and technology, the medical center in which she works does not use digital health records.  All visits are documented on paper.  Before I leave, my doctor will ‘xerox’ a copy of her notes for me to take home.  Old-school technology used to keep this engaged patient in the loop.

    A visit to my neurologist’s office is similar in that lots of trees are living their second lives.  I am required to complete paper forms documenting the status of my MS symptoms and potential areas of disability before/at each visit.  If this information were collected electronically, just think how easily data could be tracked from visit-to-visit.  Instead we will flip through the dictated notes from previous visits to evaluate and compare.

    In contrast, my primary doctor has been using Electronic Health Records (EHR) for over 10 years.  Information is updated during the nurse intake session and again with the doctor. There have been several instances where my doctor was able to look up information and share it with me in the room.  Her office also uses a system which prints prescriptions and notes for me to take when I leave.  It seems to work well for this office, but unfortunately these records are not integrated to any other system I might encounter in my health care journey.

  • Right now I simply can’t picture my neurologist or rheumatologist having electronic health records.  However, there are financial incentives for them to do so sooner rather than later.  The Centers for Medicare and Medicaid Services (CMS) is offering payments to eligible professionals and hospitals who adopt EHRs.  Those eligible professionals or hospitals who do not begin using EHRs by 2015 will see their Medicare/Medicaid payments adjusted.

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    This is kind of cool, although simply having electronic health records may not be enough.  I would like for those records to be integrated from doctor-to-doctor and hospital-to-hospital. AND I’d like to have direct access to those records.

    A Right to Your Records

    Last summer I traveled in person to the local hospital where I had received my first two rounds of Rituxan to ask for a copy of my medical record (basically because I wanted to see what was documented after a very difficult infusion experience).  According to the law, I have a right to get a copy of those records, however I encountered some difficulty.  It is important to note, however, that rules may vary by facility regarding how a patient may obtain records.

    First I needed to fill out a request form, then wait for the records to be prepared.  Then I was told that my records couldn’t be released because my file was still “open.”  My doctor would need to “close” my file before I could see my record.  I was told to talk to my doctor.  I informed this woman that my treatment cycle was complete and that I did not plan to return to their hospital for future treatments; my case should have been closed upon completion of the round of infusions. 

    Eventually she called the Infusion Center and talked to a nurse who sent word for me to come to their wing.  An infusion nurse printed out a one-page summary of the day of my infusion and handed it to me with a quiet “don’t speak of this” demeanor.   It was very odd that the whole process of getting this record was a cloak-and-dagger endeavor for something which is my right to obtain upon request.  But the important part was that I was able to read my record, which was inaccurate in the facts regarding how many nurses and how many sticks it took to start an IV. 

    It makes me wonder how many records may be inaccurate for any of us.  Have you read your medical records?

    Next time, we’ll talk about digital health information which you may encounter online as a digital health consumer. 


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.


Published On: September 25, 2011