Over the past few weeks, two of our clients have run into difficulties coordinating care across multiple healthcare systems and providers.
One client receives some care from Boston Medical Center and additional specialist care at Beth Israel Deaconess Medical Center. Recently, he decided to see a specialist associated with North Shore Medical Center (Northern Division of Partners Healthcare).
Another client receives care from a Rhode Island based primary care physician as well as from a specialist at Brigham & Women’s Hospital. She was preparing to visit Dana Farber Cancer Institute.
If you live here in New England, these institutions will no doubt be familiar. What might be surprising, however, is the degree to which these institutions do not share patient medical records with one another.
In these two examples, this meant that my clients — and my staff! — had a lot of work to do to make sure the information flowed completely, quickly, and to those who needed it. But it was much more difficult than it should have been!
A Little Bit of Background
The use of Electronic Medical Record systems (EMR) has exploded over the past 10-15 years. As a frequent user of healthcare information for clients, family and myself, I am thrilled to have such easy access… sometimes!
The problem is that despite the Health Information Technology Provisions legislation passed as part of the American Recovery and Reinvestment Act of 2009 — not to mention the more than $49 billion allocated as part of this to, “support and promote the adoption, implementation, and use of interoperable Electronic Health Records” — consumers continue to be faced with a lack of record-sharing among institutions.
And, because there is no single repository for all of our healthcare information, this broken “system” allows for duplication of testing, wasteful cost and the potential for lost information at every step.
What’s the Solution?
As healthcare consumers preparing to see physicians for evaluations, and given the lack of information sharing described above, we must take responsibility on our own behalf.
That means being prepared to share our complete medical histories, clearly describing our experiences with our respective bodies, and taking active steps to overcome administrative barriers that can impede communication and efficiency.
Only then can our physicians assimilate the relevant information, develop a preliminary diagnosis, establish a plan of care, educate us about the evaluation, and guide us through the next steps.
Here are some suggestions:
- Prepare a complete list of your medical conditions, surgeries, and hospitalizations. Additional items that can be included on the list are procedures and vaccinations. In addition to informing your physicians, this document can help you remember things about yourself and your medical history that could be relevant to a new healthcare situation.
- Prepare a complete list of all your medications — both prescribed and over the counter. Be sure to include the dosage, how often you take the medicine, what you take the medicine for and who prescribed it (if applicable).
- Prepare a complete list of your healthcare team members and specialists, including names, addresses, telephone and fax numbers.
- Enroll in and use all the Patient Portals to which you have access to prepare the documents above — much of this information may already be there, including vaccinations and past procedures. That said, don’t count on the data to be complete and/or accurate; review it all very carefully.
- Print and bring with you any diagnostic testing results relevant to your situation. This may include blood work, X-Ray images, MRIs, etc. This saves time, money and needless exposure to things like additional X-Ray radiation should a given physician not have access to your information electronically.
- Prepare a written agenda, stating your objective, a list of topics you want to discuss and specific questions you want to ask.
- Bring a Care Partner to act as another set of ears, a scribe and a person who can ask questions you may forget to ask in the moment.
- At the end of your appointment, ask the physician to dictate an “office visit note” and request that he/she send it to all your relevant team members — AND a copy to you! Take responsibility for this — unfortunately, you cannot depend on the administrative systems to work behind the scenes. Request your own copy of the note so that if the system doesn’t work, you can share it yourself.
- If you believe that direct coordination of care between physicians is critical, ask the physician to make a telephone call and have a live conversation (if possible, while you are there). Nothing can replace the clarifications that occur with real time interactions. (Yes, I know, this is a radical idea!)
Summary
We have made tremendous progress in recent years in the collection of huge amounts of healthcare data and with the sharing of it with healthcare consumers. But there remains much to be done, particularly in the sharing of this information across disparate systems.
In the meantime, take responsibility for ensuring that your vital information is readily accessible and shared as needed. I guarantee that if you take the time and expend the effort, you will have more satisfying and productive experiences. We all must do our part.
P.S. One last thing. I strongly believe that all of us should have access to the notes physicians write about our encounters with them. Some Patient Portals have “Open Notes,” a system that allows you to review and download all this information.
It is unconscionable to me that with the billions of dollars being spent on new medical record systems that all Patient Portals do not offer this feature (including some of the major players in the Boston healthcare market). Our medical records are OURS and transparency is invaluable to better healthcare. Can you tell I feel passionately about this issue?!