This is open for debate. What are the patient workload and capacity implications of having access to the medical records? Is it net benefit (as in more capacity due to better understanding and easier caregiving, lower cost/effort of accessing clarifying and helpful information) or net harm (as in docs using the record to communicate with patients rather than directly; records written in impenetrable jargon; access is through portals and other devices that patients negotiate via difficult and cumbersome protocols?). What is your experience?
Open access to medical records and reforms — Let’s hear from you!
Isn’t this for each patient to decide? So that the option should be available to all. There will not be a one size fits all – but it is far too difficult now to truly access, own and use your own medical data.
A related concern that occurs as soon as we print summaries from the electronic record or use portals is the requirement to use ICD code language for diagnoses. The language used between patient, family and clinician to describe an issue is very important. We must choose carefully when to say “dementia”, “cognitive impairment”, or “trouble with memory”. Our electronic records often make the choice for us.
Rachel Wheeler MD
There are several concerns to me.
One concern is privacy —
#1. I don’t think that everyone in a medical institution should have access to my personal medical record unless I give consent. This would not happen with print versions. Permission needs to be granted on a case by case basis, if desired. Just because you go to one medical professional in an institution does not mean that you would go to all others in that institution nor want everyone to have access.
#2. There is much interest from criminals in patient medical information for personal identification and financial information. Somehow an corporate entity got enough information to try to get personal information from personal health insurance company, who fortunately contacted to get permission due to HIPAA compliance. Don’t know where the breach came from. The corporate entity was not recognizable by insurance company nor self.
— Big Precision Medicine Plan Raises Patient Privacy Concerns http://www.scientificamerican.com/article/big-precision-medicine-plan-raises-patient-privacy-concerns/
— Privacy concerns over government’s health care website http://www.cbsnews.com/news/privacy-concerns-over-governments-health-care-website/
Another concern is security of private information —
#1. As with other cases of digital records in business world, when breaches occur they can be far more reaching than a paper breach. And serious breaches are occurring related to health information:
— 2015 Could Be the Year of the Hospital Hack http://www.technologyreview.com/news/533631/2015-could-be-the-year-of-the-hospital-hack/
— 4 Things to Know About Health IT Security http://www.medpagetoday.com/MeetingCoverage/HIMSS/44536
— Fines Remain Rare Even As Health Data Breaches Multiply http://www.npr.org/blogs/health/2015/02/27/389328345/fines-remain-rare-even-as-health-data-breaches-multiply
—- 5 Problems With Mobile Health App Security http://www.medpagetoday.com/PracticeManagement/InformationTechnology/44161
Another concern is accuracy of records —
#1. Electronic records do not necessarily equate with more accurate records. I recently got copies of my records from the last md visit and was surprised to find that my medications were totally wrong though I was asked and informed for what ones I was currently on. There were medications on the list that were only for post surgery several years ago that were not DC’d on the record. And errors re: others, including drug alleries. Another family member needing several medications had the same experience – the medical record had not DC’s some meds that were stopped (many due to bad reactions), wrong dosages, incomplete list of drug allergies, etc. If one were unconscious and medical entity depended on the record they had it would be catastrophic. I have also seen non-medication inaccuracies in the record that can affect care, including
#2. Just as with credit card and other breaches, when errors occur they can be far more reaching than when happens with paper.
Dealing with any / all of the above can be extremely disruptive in the face of dealing with an already complicated, complex, overwhelming illness(es) (life), and in some cases more than unmanageable. Certainly these issues must be considered very carefully, and the patient must have control not only over the care for his/her illness(es) as well as over their personal information because any privacy, security, accuracy breakdowns must be in the end born by the patient.
Vigilance is especially important until we have HIPAA protections (that work) for electronic, digital health information and platforms. Without such protections, a myriad of privacy and security problems can occur, even from government websites.
I see no problems that cannot be overcome for open access to records for patients. In fact it can actually benefit all with patients seeing inaccuracies that can be communicated to the health provider for record correction.