Can Facebook Save Us?

At some point, this gets to be ridiculous. Online, I can buy any item from anywhere at any price, pay any bill, watch any movie, listen to any song, order dinner, schedule car repair or read about any subject on Wikipedia.  I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block.  However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.

Today, I am seeing long-term patient, Thomas R.  Father of three and a really nice guy, Tom is a medical challenge.

He is immunocompromised and status post 20 years of complex chemotherapy, radiotherapy, a bone marrow transplant and several bizarre complications, we barely understand.  In the last two months, since his last visit with me, he has seen an internist, a dermatologist, a podiatrist, a neurologist, a dentist and an infectious disease specialist.  These doctors ordered X-rays, lab tests, blood cultures, an EMG, a skin biopsy and several new medicines.

These are confusing tests resulting in confusing diagnoses with confusing therapy in a confusing patient.

What records do I have of all this new complexity? Nada. None.  Moreover, based on our files, all these other physicians have none of ours.

Yesterday I saw Ellen T.   This highly intelligent woman was previously in excellent health, but two years ago she suffered devastating hematological complications of routine surgery.  She presently takes 21 different medicines from a laundry list of specialists, including several surgeons, kidney specialist, physiatrist, rheumatology, gastroenterology, cardiology and endocrinology.

On January 1, 2013, two things went wrong.  First, her blood sugars skyrocketed dangerously and remain over 300.  Second, she changed her health insurance and most of her doctors do not participate in the new plan.  She needs to immediately transfer her records and establish a new care team. Do we have a copy of all this information from all these locations?  Not at all.

Bob M. dropped by the office to get a lab test after four months of chemotherapy.  A tooth is causing pain, and it needs to come out.  His dentist sent a note asking whether Bob should stop taking his blood thinner.   Our records have no mention of any blood thinner.  Bob never told us, because his primary care doctor has been prescribing and adjusting that unstable medication.  We shudder at the thought of how the blood thinner interacted with the chemo.

Would you go to a bank that required you to carry a paper ledger of all your deposited money if you moved from one branch to another?  Would you fly a commercial airline whose arrival at its destination airport was always a surprise?  Shop at a supermarket with unlabeled aisles, food piled in bins, and secret prices that had to be looked up, one item as a time, when you checked out?  We continue to tolerate a health care system where our personal information is kept locked in unconnected, non-communicating silos, so that every time we see a new practitioner we have to start again and the only thing that protects us from disaster is our own memory of our medical past.  The result is duplication, error and instead of treating each patient based on their health history, doctors must guess about the best care, without knowing its possible impact.

Our entire medical histories, drug lists, allergies and complaints should be securely stored in an accessible common file much like Facebook, bank accounts or Amazon. Each of these maintains a master file on us, which can serve as a model.  With our permission, doctors, pharmacists, nurses, podiatrists, chiropractors, hospitals and even nursing homes, should have easy, secure, on-line access.  When you see a new caregiver, they should open this master file to understand who you are and, critically, record new diagnoses and treatments in that common electronic vault.  A unified universal Electronic Medical Record (EMR) should be the foundation of health prevention and therapy, and not be some holy grail we never seem to reach.

There remain significant hurdles to reach this critical goal. We must push the techies to solve the obstacles to full universal EMR implementation, which include the challenge of data input, the rules for internal organization (what does the e-chart look like?), a national backbone and vital security.  We must insist that health providers fully commit to this core project. Finally, we must allocate needed dollars to build this vital part of our infrastructure.

Will a universal EMR save dollars?  Not right away, but in the near future, absolutely.  Will it improve the safety, quality and efficiency of medical care and thereby save lives.  Definitely.  Is there any reason to maintain our system of primitive individual medical isolation?   None at all, continued delay would be ridiculous.

James C. Salwitz, MD is a Medical Oncologist in private practice for 25 years, and a Clinical Professor at Robert Wood Johnson Medical School. He frequently lectures at the Medical School and in the community on topics related to cancer care, Hospice and Palliative Medicine. Dr. Salwitz blogs at Sunrise Rounds in order to help provide an understanding of cancer.

12 replies »

  1. as i wrote abobe – i see the agenda pushed forward by either the states via their state-wide-hie’s and by the providers, incentivized by MU3 dollars, and lastly by “us” who drive demand.

  2. “it is the providers who will be obliged to push the update “our” way.”

    Then it’s not the “we” or the “us the citizens”, it’s “them”, the providers. What incentive will herd the providers into this “Facebook” solution?

  3. the facebook approach, as the article indicates, and as far as i can vision it, will have a single repository. a single source of truth. it is the providers who will be obliged to push the update “our” way. per my comment above, i believe this is an opportunity for states to make a meaningful use with their state-wide-hie’s projects, which is far beyond the direct project. if that will not happen then i believe there is a room for a private venture, a la facebook, to become a de facto, standard place for PHI and coordination of care.

  4. ““we” is us the citizens.”

    So how do all the “citizens” mobilize to get this done?

  5. Excellent points. Can’t some of this be solved procedurely? I’m speaking from a patient perspective. Otten see patients have to provide the same information within a single organization multiple times. Not that comfortable with a FB solution but perhaps standardization of medical data across all areas coupled with a patient granting sharing of medical data across individual practices as well as large systems.

  6. “We” must stop looking at the EMR as the only place for all the answers… (i.e. dont hold your breath). How about – could some of the problems be solved by having those providers “talk amongst themselves”? Or are they too busy to do that?

  7. “we” is us the citizens. yes – i believe facebook, or the facebook approach can save the day and the states should be the first ones to push towards that direction as they are applying and/or putting their state-wide-hie money into use. one centralized location for all our data with the right incentives for EMRs to integrate and connect back to the “source”, IMHO makes much more sense than the direct project… which can deliver some important functionality though it does not have longer range vision for healing the core issue. face it, “we” are just like lord voldemort and our medical record/history is fragmented into unfindable pieces of data. good read james – thank you.

  8. Of course, not a week goes by that you don’t hear about some big data repository (Twitter, banks, etc) being hacked and personal information getting leaked. We still need to strive for the universal EMR, but it’s a long road ahead. I particularly liked your supermarket analogy–in what other circumstances would we agree to services without knowing the costs up front? Only healthcare…

  9. “There remain significant hurdles to reach this critical goal.”

    Yeah, e.g., there’s no margin in it. Opacity+Differential Database Schema = Margin.

  10. Excellent post. I agree that EMR should be the baseline and not a holy grail. Apart from the significant techie hurdles that you mentioned, there are also significant challenges with respect to cost. Companies that offer EMR often have long, complex buying cycles that can make buying into EMR an unattractive venture for private practitioners. It doesn’t help that every so often, they slap you with “database management” charges. If a site like Facebook can stay afloat solely on the number of hits it gets, it’s about time we ask more out of EMR.

  11. “We must push”, “We must insist”, “we must allocate”

    Who is the “we”?