Today I ran into my old figure skating coach. She was my first coach some 24 years ago and while it was a delight to see her, it was also incredibly awkward. The thing is, whether I’m running into an old acquaintance or meeting new people, I’m never quite sure what to say.
I’m giving up on patient portals.
I asked my doctors to deactivate my accounts and I’m sticking to email.
After writing a blog post on the need to inform others when I am having a panic attack, I did go back and make a few of my own cards. When Nikki Seefeldt over at I Live & Breath reposted the blog on her site, I was reminded that I wanted to share my solution. I’m posting the cards here so you can get an idea of what worked for me end hope that others will feel free to use them or adapt them to fit their needs.
I will note that some individuals suggested that I include more information like a website address. However, given that these are to be used in emergencies, I felt that the simpler the better and that the person helping will not have time to go to and search a website for helpful information while I’m having a panic attack. Others may find that they want more or less information for their cards. But I encourage anyone making their own cards to focus on only including the minimum necessary information to get the help you need in that moment.
You may save these images from my site or feel free to contact me via the comments below or on Twitter @GilmerHealthLaw and I can send you the files I worked on. They are designed to fit the size of a business card.
I only ask that you do not use these to make a profit for yourself or any other organization. I would like to keep these free and accessible to the community.
Three doctors have now fired me following the message I sent to all my providers. I honestly am not completely surprised though I am deeply disappointed. I think that we can do better than this in healthcare. I think patients deserve better.
However, I’m not sure that the doctors I’ve written understand how I came to the decision to write them all as I have been asked “have you considered…?” on more than one occasion. And the answer each time I’ve been asked is, yes. Yes I did consider a number of things before pressing send.
I am rather disappointed to receive your letter requesting that I select another physician dated June 3, 2016. (see below)
I sent a letter to all of my providers, carefully choosing my words so as not to offend and to encourage my providers to work with me and with each other to provide better care. Unfortunately that letter was met with defensiveness. Providers bucked at the idea that a patient could be so empowered and engaged as to write a letter questioning the system, find a way to communicate with her providers in an unconventional and yet legally approved manner (i.e. via email), and request boldly to move forward in care.
I stood firmly as administration and other providers seemed condescending, yet I was willing to move forward. I was frank when your and other offices refused to comply with the provisions of the Health Information Privacy and Accountability Act. And in return, you have dismissed me.
The Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that community too). I felt a bit of a high thinking – Yes! This is what advocacy is about! I’m not crazy! Other people feel this too! This means something!
Then the next day, my emotions took a marked turn and I started to feel bitter or just more frustrated. The patients get it. But the providers don’t.
I went to an appointment and walked out with the express feeling that I was being asked to sacrifice more of myself, my time, my energy. After, I went to the pharmacy, where because CVS bought Target Pharmacy – CVS which I expressly left because of their horrible service – my prescription was not filled and my insurance was messed up. And all I could think is that there is no more of me to give. There is nothing left of me. I have given it all to health and healthcare and been sucked into the maelstrom of tests and medicines and procedures, doctors and therapists, industry and politics. I have given everything and I have no idea who I am.
Recently I have written a lot of long missives to separate providers and the administration of the health center where they practice regarding everything from emails to insurance coverage to health issues to theories of patient engagement and care. For weeks I’ve been debating whether to simultaneously email my entire care team and tonight felt that I was ready to do so.
This is a message to all my providers: