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.
Read This – Powerful stuff! RT @tedeytan: Post: "Quote it all, Ted":This is what @kaitbr 's meds regimen looks like: http://t.co/CLoIUtL
Read This – Powerful stuff! RT @tedeytan: Post: "Quote it all, Ted":This is what @kaitbr 's meds regimen looks like: http://t.co/CkoK6QI
Reading > MT @tedeytan: "Quote it all, Ted" @kaitbr shares her medication regimen: http://t.co/TeX89Si #epatient #hcsm #hipaa
Fabulous! I totally agree! RT @kaitbr: [email protected] did you see @tedeytan 's blog? http://t.co/TCQAxW8 quotes me about patient engagement.
Ted, thanks for giving voice to a powerful opportunity to free healthcare data – and wisdom – from the assumption that no patient ever wants to share their personal medical story. At WEGO Health, our social media power users (we call them Health Activists) DO care about privacy and security, but many, many of them would rather disclose all their medical history than slow the progress of medicine.
Empowered consumers, many of whom recognize the value of “exchanging” privacy for the greater good, represent an untapped reservoir of healthcare change.
Great series of postings, Ted. Given a serious illness or tricky diagnosis, What Patients Need is instant access to EHR to create instant access to the next specialist or expert. Confidentiality is nearly a non-issue if you or your loved one’s life is on the line. Speed is. There must be some way to provide EHR access that speaks to patient needs — reasonable risk versus hc imperatives — rather than physician or insurance needs to protect from a lawsuit. (If they feel safer locking them up or making access difficult, their need rules over patient survival.) The person providing the “education” and “warning” about confidentiality are the entities that are driven by self interest, not patient interest.
When patients go commando, as often occurs with folks on the ACOR list, and speed is of the essence, we need instant record access since the institutions themselves are slow and incompetent. After months of misdiagnosis of my daughter’s lump on her wrist (“It’s nothing, mom. Just a cyst…”), medical institutions lost the slides, lost the the nuclear medicine films, the BASELINE for diagnosis and tumor growth!, lost the diagnosis, couldn’t be reached by phone (on vacation), lost an MRI report, didn’t notice that contrast film was missing, etc. etc. ad nauseum. An ordinary patient has no influence in dealing with the front desk folks, the Marcias, Carols, Lupes, etc. who say “The doctor cares greatly about your child but he can’t come to the phone now.”
I had to do this manually, by getting US senators involved. It took weeks and exhausted our household. Just like Regina’s situation.
ACOR can get patients to exact contacts within a specialist institution within hours. The institutions almost always screw up because of lower level, low paid, low education staff (we watched a clerk at Stanford input a bunch of typos into my daughter’s file. I wanted to shove her aside and say, “Here. Let me do it.” No wonder they couldn’t locate records!).
The goal is Patient Autonomy in Control of Records. Patients should be able to rate concerns speed v. confidentiality. If your child might die, no one cares about the latter. The lower level staff are so incompetent already, they probably breach confidentiality all the time.
Ted, thanks again for giving me the opportunity to talk with you about Patient Centered care and to share with you my particular experience with regards to my medication regime.
I strongly agree with both the comments above with regards to the value of patient experience, and especially the nearly priceless value of an EMR (or PHR) which is accessible and owned by the pt or a pt’s family. I don’t worry much about privacy with regards to my meds and so keep an up to date list in my smartphone. So even if I am not able to remember, the list is available to caregivers if necessary. While this is not even close to being representative of my medical record, it is vital information which in an emergency could help save my life. Frankly, I would love to have access to my own records via a web portal or a thumb drive, or even in a cloud space. Honestly, the value of access FAR OUTWEIGHS the possible privacy issues. When it really matters, as Christine’s story so eloquently explains, privacy MUST take a back seat to saving a life. This seems so basic, and yet fear of litigation (or whatever) has pushed us to the brink of absurdity with regards to following the “regulations.” Daily it seems, I am made aware of the frustrations of those who need their data and can’t get to it, or find that it is woefully inadequate once they do get it because of transcribing errors or other “down the line” problems NOT associated with the actual provider.
Each step in a record’s creation, it seems, offers the opportunity for errors which can be deadly and we as empowered patients and family members MUST have ways to attend to these problems which lurk out of sight until they do the damage. An inaccurate Medical Record becomes a deadly game of telephone; and claiming that “to err is human” is not anymore the answer to the problem today as it was years ago in the context of actual medical errors.
My point is that every facet of medical care, from the making of an appointment to the interaction in the room, to the writing of the medical notes, to the transcribing, to the patient reviewing their own record MUST be diligently attended and open to transparency for the system to ever improve beyond “measurable outcomes.”
Thanks again for writing this post and including me in your world. I am honored to be walking with you on this path…