Blog post by Colin Hung
A few weeks ago I had the privilege of attending my 10th HIMSS conference in Las Vegas. Over the past few HIMSS, there has been a growing call for healthcare institutions and payers to provide patients open access to their medical records. As I was preparing for #HIMSS16 I started to think about what I would do if I had complete access to my medical records. I actually couldn’t come up with a really good answer, so I decided to ask my fellow #HIMSS16 attendees.
My deepest conversation on the topic of access to patient medical records was with Mandi Bishop @MandiBPro, Health Plan Analytics Innovation Practice Lead at Dell Healthcare. Bishop felt strongly that patients needed access to their medical records in order to correct errors and omissions. We considered the not-so-hypothetical example of a patient who had been misdiagnosed by one physician and properly diagnosed by a diagnosed by a different physician. Two medical records, two different diagnoses. What if this patient ended up in the ER of a hospital that shared records with the first physician? Yikes!
In her post “When Patients Read What Their Doctors Write”, Leana Wen MD @DrLeanaWen talks about her experience letting a patient see what she was typing into the medical record:
Since I started sharing notes with my patients, they have made dozens of valuable corrections and changes, such as adding medication allergies and telling me when a previous medical problem has been resolved. We come up with treatment plans together. And when patients leave, they receive a copy of my detailed instructions. The medical record becomes a collaborative tool for patients, not just a record of what we doctors do to patients. When patients see their records, there’s more trust and more accuracy.
– Leana Wen MD
I’m sure this story repeats itself numerous times in the offices of Dr. James Legan @jimmie_vanagon where he displays the EHR on big screens so that patients can see exactly what’s being written into their record.
The most poignant conversation I had at #HIMSS16 was with a marketing friend. We spoke about her wish to gain access to the medical records of members of her family. If she had that access, she would have the records analyzed for clues to the unknown disease that has affected several of her loved ones. At the very least she could pour over the data herself to determine if there was some sort of pattern. However, like many patients, she is running into resistance.
Many doctors and healthcare institutions are uncomfortable offering full and open access to medical records. An article in The Guardian capture one of the reasons for their fear:
Some doctors, especially GPs, are also concerned that, from 2018, notes that they and other health professionals have written in patients’ medical records, which they were never intended to see, will become known to the patients involved. For example, a GP may have recorded that a patient may be at risk of cancer because they smoke, but never told the person that directly.
– The Gaurdian
I can “sort of” understand this fear. Here is my own analogy. Every day at work I attend meetings. During those meetings I take notes so that I can remember what was discussed and what tasks are assigned to the various people. I write these notes solely for myself. I’d be uncomfortable sharing those notes with others “as-is” because I sometimes write down questions I have about a particular decision we’ve made. Out of context, my written questions would make it seem that I do not agree with our team’s plan.
In the business world, if meeting notes need to be shared then actual meeting minutes are created. These meeting minutes are created knowing that they will be shared. The minutes, therefore, are free from short-forms and personal opinions.
It’s not a stretch to think that doctors would want the same for their notes. But unlike the business world, where people are paid to produce meeting minutes, doctors are not compensated for their documentation time. There is no financial incentive to create patient-consumable notes based on their own personal ones.
Finally, the most interesting #HIMSS16 conversation I had around patient data access was with Matt Fisher @Matt_R_Fisher, co-chair of Mirick O’Connell’s Health Law Group. Fisher and I had a lengthy discussion about the difference between patient ownership of data vs access to data. He pointed out that there seemed to be two different reasons why patients want control over their data:
- Patients want to control who can access the data inside their medical records (ie: payers, employers, researchers, etc). Patients in this camp talk more about OWNERSHIP and tend to be very concerned about privacy.
- Patients that want access to their data so that they can be more active participants in their health. Patients in this camp talk about ACCESS and tend to be concerned about interoperability.
Fisher summarized this belief in his post “What to Do with Health Data: A Shakespearean Tangle”:
Given that data can never be kept fully private, the concern about ownership does appear to be overblown. Is ownership really needed? …Ownership will not and does not ensure privacy.
– Matt Fisher
As I was researching this blog I discovered many benefits of patient access to medical records. Everything from less anxiety to reduced medical errors to improved physician/patient relationships can be tied to patients being able to access and provide input into their own medical records. I even came across an interesting pilot project in Uppsala, Sweden that showed some very powerful results:
- 50,000 unique patients/citizens have used the service with a total of 250,000 logins
- There has been a significant improvement in the quality of the information held on the EHR
- Communication between the health care professional and the patient has been improved
- Patients feel more empowered with a more balanced relationship between the health care professional and patient
- Health care professionals have more time for clinical issues as a result of reducing administrative constraints
- Patients have achieved easier access to health services.
- Potential benefits in terms of patient safety and adherence to treatment
So what would you do if you had access to your medical record and what benefits would you hope to realize with that access? Join us on Tuesday March 15th 2016 at 8:30pm ET (for your local time click here) when we will discuss the following topics:
- T1 What is the biggest hurdle to patient access to health data? Lack of incentive? Fear? Technology?
- T2 Which is more important to you, owning your health data or being able to freely access your health data?
- T3 What would you do first if you had full access to your health record?
- T4 What do you believe would be the biggest benefit TO YOU of full access to your health record?
Final note: If you haven’t watched this wonderful video from Ross Martin yet – GIMME MY DAMN DATA, then you have to click:
References
“When Patients Read What Their Doctors Write”, Leana Wen MD, NPR, August 17 2014, http://www.npr.org/sections/health-shots/2014/08/14/340351393/when-patients-read-what-their-doctors-write, accessed March 11 2016
“Health-Care Providers Want Patients to Read Medical Records, Spot Errors”, Laura Landro, The Wall Street Journal, June 9 2014, http://www.wsj.com/articles/health-care-providers-want-patients-to-read-medical-records-spot-errors-1402354902, accessed March 11 2016
“In Montana, One Physician Brings the EHR to the Big(ger) Screen”, Gabriel Perna, Healthcare Informatics, July 24 2016, http://www.healthcare-informatics.com/article/montana-one-physician-brings-ehr-bigger-screen, accessed March 11 2016
“What to Do with Health Data: A Shakespearean Tangle”, Matt Fisher, Mirick O’Connell’s Health Law Blog, November 30 2015, https://mirickhealthlaw.wordpress.com/2015/11/30/what-to-do-with-health-data-a-shakespearean-tangle/, accessed March 11 2016
“Lifetime Health Records For Patients?”, David Harlow, TheHealthcareBlog.com, September 16 2015, http://thehealthcareblog.com/blog/2015/09/16/lifetime-health-records-for-patients/, accessed March 11 2015
“Much Ado About Data Ownership”, Barbara J Evans, Harvard Journal of Law & Technology, Fall 2011, http://jolt.law.harvard.edu/articles/pdf/v25/25HarvJLTech69.pdf, accessed March 11 2016
“Hospital patients may worry less after seeing their medical records”, Lisa Rapaport, CBC News, March 20 2015, http://www.cbc.ca/news/health/hospital-patients-may-worry-less-after-seeing-their-medical-records-1.2989137, accessed March 11 2016
“Doctors voice concerns over plan for greater patient access to medical records”, Denis Campbell, The Guardian, September 2 2015, http://www.theguardian.com/society/2015/sep/02/doctors-doubts-plan-patient-access-medical-records, accessed March 11 2016
“Gimme My Dam Data”, Ross Martin, August 26 2011, https://www.youtube.com/watch?v=0gpk-fbfg4Y, accessed March 11 2016
“Gimme My DaM Data: The Video, The Story, The Next Speech”, e-Patient Dave, August 27 2012, http://www.epatientdave.com/2012/08/27/gimme-my-dam-data-the-story-the-video-the-next-speech/, accessed March 11 2016
“Doctors should give patients their damn data”, Zackary Berger MD, July 16 2013, Kevin MD, http://www.kevinmd.com/blog/2013/07/doctors-give-patients-damn-data.html, accessed March 11 2016
“Regina Holliday: We’ll fight Meaningful Use Stage 2 with a Data Independence Day (Video)”, Chris Seper, Medcity News, April 12 2015, http://medcitynews.com/2015/04/regina-holliday-mad-hell-meaningful-use-2-heres-shes/?rf=1, accessed March 11 2016
“Point and Counterpoint: Patient Control of Access to Data in Their Electronic Health Records”, Kelly Caine and William Tierney MD, Journal of General Internal Medicine, January 30 2015, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4265223/, accessed March 11 2016
“Giving patients access to their health data: pilot results”, European Commission, May 26 2014, https://ec.europa.eu/digital-single-market/news/giving-patients-access-their-health-data-pilot-results, accessed March 11 2016
“ONC Data Shows Disparities in Patient Access to Health Data”, Sara Heath, Patient Engagement HIT, February 26 2016, http://patientengagementhit.com/news/onc-data-shows-disparities-in-patient-access-to-health-data, accessed March 11 2016
“Pioneers call for renewed effort on patient access to data”, Jeff Rowe, HIMSS Future Care, January 22 2016, http://www.himssfuturecare.com/blog/pioneers-call-renewed-effort-patient-access-data, accessed March 11 2016
“A stubborn problem: How to increase patient access to health data”, Greg Slabodkin, Health Data Management, January 22 2016, http://www.healthdatamanagement.com/opinion/whats-the-key-to-getting-patients-to-access-their-records, accessed March 11 2016
“What does it mean to own your health data?”, Jonah Comstock, MobiHealth News, September 9 2015, http://mobihealthnews.com/46638/what-does-it-mean-to-own-your-health-data, accessed March 11 2016
“The Healing Power of Your Own Medical Records”, Steve Lohr, The New York Times, March 31 2015, http://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html?_r=0, accessed March 11 2016
Image Credit
Locked – A loves DC https://flic.kr/p/6fqwzm
hcldr 
I predict this will be a sensational conversation at warp speed. Really looking forward to it. #hcldr #data #healthcare
great choice of topic Colin. Also there is an issue of chronic illness patients needing access to their records for treatments outside their local health system for another specialty clinic or another center who sees more cases of their diseases. Getting & accessing those records is harder than one thinks & bureaucracy & silos I think stand in the way of much of the transmission these days as well. Looking forward to the chat on Tuesday.