A few months ago, 80-year-old Mr. F. contacted me as he began to pursue a diagnosis and treatment for a variety of symptoms he was experiencing. His primary care physician was with a large physician practice associated with a major healthcare system here in the Boston area.
Mr. F.’s journey brought him to a neurologist associated with a competing, local healthcare system and then to another specialist associated with yet another healthcare system. As you might imagine, things quickly got complicated.
Carry your own data
As we prepared for his upcoming appointments and created the documents I espouse we should all have (a list of conditions, surgeries and hospitalizations; a comprehensive medication list; an agenda for the first meeting), he revealed to me that over the past year, he’d had a CT Scan and MRI that may be relevant to his symptoms. He also stated that his primary care physician had conducted some blood testing a few months back, although he was not sure which tests were completed or the results of any of them. Regarding the CT scan and MRI, he never bothered to obtain a copy of the report or the actual images.
Whether we self-refer or are referred by a physician, we hope that after we’ve sometimes waited a significant period of time to see a specialist, that during the appointment, a diagnosis can be made and a treatment plan developed. There is nothing more frustrating to healthcare consumers than to be told that health information is not available and it must be gathered or that testing must be repeated.
In Mr. F.’s case, for example, and although his MRI was completed at a facility that shared data with the specialist in question, the facility failed to post the images into the system. Luckily, we had planned ahead and had picked up a CD to bring with us.
And so, as a first step, and to ensure the most productive outcome from specialist visits, I recommend gathering all relevant information and hand-carrying it to appointments. Even if a physician’s office asks that you send information ahead of time, make a copy for yourself and bring it along, just in case.
Coordinate among all relevant parties
In Mr. F.’s case, his preliminary diagnosis with the specialist required follow-up from the primary care physician. Further diagnostic testing was ordered, the results of which were relevant to all physicians involved – it was our job to make sure information made the rounds:
- I had to fax some information to the primary care physician.
- I had to use snail mail for one of the specialists.
- I could use email (but not the Patient Portal) for another specialist.
As you can see, you must be diligent about your own healthcare information and willing to engage a multitude of high and (too often) low tech tools to ensure transfer of information.
Some additional tips for gathering and sharing healthcare information:
- Each time you access care from a new provider, ask about the best way to communicate with that provider.
- If available, register to access information via a Patient Portal. Ask if the physician uses it and how emails are managed in his/her office.
- If your healthcare system is involved with Open Notes, read the physician notes prepared after each visit to ensure that you have the same understanding as the physician about the discussion and the treatment plan. Communicate with your physician about any discrepancies.
- Create a paper file, using a three-ring notebook, to organize information you gather along the way. If you can access information via a Patient Portal, do so and print out copies. If a Patient Portal is not in use, investigate the procedure for manually requesting that information be sent to you (it usually involves making a request in writing and signing a medical release form).
- Ask if your physician will share a personal email address and if it is possible to communicate that way.
- Ask how your physician responds to phone requests for a call back.
- Ask if a fax that summarizes an issue you wish to discuss, including a list of questions, could be helpful ahead of a phone conversation.
- Provide the best times that you might be available for a return call and include multiple numbers if applicable.
- When attending specialist appointments, ask what relevant information is necessary for that appointment and use all high and low tech tools to gather information.
- Make two copies of any relevant medical information or diagnostic testing. Share one with the specialist and keep one for yourself.
Whew. I know, it’s a lot. But don’t worry, you need not be perfect in your healthcare gathering and sharing to experience a significant improvement in the way your information is managed.
Just do your best to get and stay organized. Then, decide today to take responsibility for your own healthcare information trail!