When I asked Kait Roe (@kaitbr) for the second time if she was sure that it was okay for me to expose her identity and personal health information for this blog post, she said:
Quote it all, Ted. My privacy is less a concern than teaching about the realities.
When I asked her the first time, here’s what she said:
There is much good to be said for HIPAA. But my concerns for privacy are more related to discrimination against those with MH diagnoses rather than the typical concerns found there. But frankly, I make a better advocate and a better human being when I disclose the TRUTH and all the truth. I don’t believe in outing others though- in anything, so I appreciate the power I have to CHOOSE to disclose.
And before I even asked, here’s what she said:
Feel free to use the photo and my name and info. Anything which will help people understand the value of that dispenser is worth it. Cheers, Kait
I am reflecting a little on the HIPAA-covered world meets the patient, and what we may be missing by inadvertently discouraging sharing, and learning.
Kait is not the first person/patient who encouraged me to quote it all. There was my friend Matt, who allowed me to show the world his multiple sclerosis regimen. And then there were these specific members of Kaiser Permanente, now featured on the KP Care Stories blog, who not only told me to use their personal stories, they gave me the clear impression that it was a disservice not to.
What’s going on here?
I think probably a few things, the advent of social media, the ePatient Dave’s (@epatientdave) of the world who say it simply: “Let patients help,” and the creation of spaces for listening – for me, most notably the Kaiser Permanente Center for Total Health.
As I have been giving walking tours of the space to internal and external stakeholders during its first 90 days of operation, Somewhere between 1/4 and 3/4 of the way around the space, it happens – the personal health stories of people and their families are revealed, spontaneously, incredibly, from people inside and outside of health care delivery, who want to help.
In Kait’s and my case. We stopped in front of this machine, and Kait called it “Heaven on a Plate.” This took me a little by surprise – why would a patient want something like this in their home?
She followed up with this message:
This is why I said that med dispenser was heaven on a plate.
7 different oral meds. 1 of which needs to be cut in half. 8.5 are taken at night, 1.5 in the morning.
And they need to be sorted into the organizer every 28 days or so. And I have two extra organizers for when I travel. So I don’t have to take a month’s worth with me.
This is only what I take daily. In addition I have two inhalers prescribed as well as topical creams.
I also have arthritis- which makes sorting these little pills even more challenging.
What part of this process is patient centered?
I asked one question – “Is the med dispenser the place to make things patient centered, or should that happen at the time of prescribing, so that the regimen might not be so complicated in the first place?” Her response is below.
As she says, ” True patient centeredness begins when any conversation starts and there is a patient invited to be involved. AT the beginning. Every conversation. Every room. Every time.”
This is why I have learned to listen as much as talk in any conversation about health. The other thing I have learned to do is have walkthroughs of The Center “accidentally” overlap so that the patient voice washes across conversations.
I’ll say you don’t need a Center for Total Health to do this in your work, just the mindfulness to do it wherever you are, online or in person. I’m posting this here to relay my experience in prototyping this approach. I can confirm that it passes testing and is ready to be scaled :). Post your experience in the comments, please!
And thanks to Kait and all the patients like her who are selfless in the gift of their experiences so that other people will have a better experience.
Ted, thanks for responding… I think true patient centeredness requires both simultaneously. We must engage the pt who will be taking the pills when they are prescribed. (for example – re my hypertension: my PCP knows me really well and could have said we would try to manage the blood pressure with diet and exercise but because stress is such a factor in HBP she knew diet and exercise would never work alone and there is not a chance in a million that my stress level is ever going to drop in any significant way. We talked about it and WE decided that adding Lisinipril 10mg, half in the morning and half at night would be the best option. That decided, we also had a conversation about my weight and what I might be able to do about it. Being on this many meds is a challenge no matter who you are, and I had been (prior to adding this one) slowly discontinuing those we felt were superfluous or changing some to more appropriate compounds for their purpose. (For example, I used to be on Seroquel for sleep. I’m sure you know it is an anti-psychotic and I had several problems with continuing on it. One, I didn’t like providers being in a position to make assumptions based on my taking the med (even though the dose was not high enough for that application), also, it caused snoring and a heaviness upon waking that were both unacceptable if we could find another option.) My psych nurse and I agreed that Benedryl would accomplish the same goal of “knocking me out” without the other problems and so we switched. THIS IS PT CENTERED CARE. So I feel strongly that engaging the patient in the exam/consultation/medical room is vital to the shared decision making process, and will provide better outcomes, if for no other reason than the patient has worked to build something and now wants to do what is necessary to succeed.
As for whether or when it is most important… Every step needs patient inclusion. Let’s use your med dispenser for example. Does it cut meds in half? Would I still have to do that? what about meds not scored and so not proven efficacious if broken? How do companies know to ask these questions, if not through the experience of someone who struggles with the realities of poly pharmacy? And what about those with arthritis who would have trouble filling the dispenser? Is there an option for those folks that still offers independence, rather than a nurse or caregiver doing it for them?
So the answer is both. True patient centeredness begins when any conversation starts and there is a patient invited to be involved. AT the beginning. Every conversation. Every room. Every time.