Interesting question: if an empowered patient is going to speak up about what s/he wants in the way of care, does that include saying “Yo, insurance people, pay for a coordinator so my bod doesn’t keep falling through the cracks!”?

I know MY answer. I guess healthcare quality (read: effectiveness) includes not just the nature of the care itself but our ability to GET the care, which these days is often determined primarily by the payment model.

This is why I’m so interested in what PCPCC is advocating for. Maybe it’s time for me to dig out another of their slide decks and post it. The small set I posted in May touches only briefly on the payment issue.

a major gist of my conversation with my immunologist yesterday is that i need someone to help me DRIVE THE TRAIN, so to speak, to coordinate my care, at least in conjunction with me :-) he expressed an overarching strategy and gave me some concrete steps, but it’s still pretty much down to me to work out the detail. on the bright side, i at least now have a medical person where the proverbial buck stops. (as educated as i have become about my condition, many medical professionals i’ve encountered look at me like i have three heads when i discuss my concerns. somehow, when a doctor talks to another doctor about the exact topic, though, it’s suddenly gospel truth.)

i think, to a certain extent, my doc is trying to coordinate things, but perhaps not in the fashion that would optimally help. i don’t know that he would have the time to do that. i am always cheered when i find someone who does that in the medical field. so far, the closest i get is my beloved nurse who coordinates all the medical hoops necessary for me to get my IVIG each month. all i have to do is pay and show up (and not react to the med, lol.)

seriously, with the gazillion doctors i have seen in the past year, i have felt incredible frustration. there is value, methinks, in having some sort of case manager/ project manager who helps you oversee your care. in theory, i suppose the HMO model was that, but a flawed one — your primary care doc was the gatekeeper to future care, but that doc would know best as to whether your medical requests had merit or were frivolous. this model, in practice, is imperfect for so many reasons: there are so many pressures on said physician, like sheer time in the day, being second-guessed by plan administrators, and costs (getting punished because you ask for tests for a patient can be a bit insane.)

i could see value in having some sort of patient ombudsman/advocate who could coordinate patient care. but who would be qualified to do that? would the advocate need to be a doctor? if the advocate was not a doctor, would he/she have any cred when dealing with docs?

just thinking aloud here, pre-coffee :-)

p.s. i’m not mamabird, nor do i play her on TV; mamabird is a friend of mine :-) honest error :-)

So, does your immunologist (the one who finally sees the whole elephant) coordinate your care?

You and I are patients. I want the industry (mostly insurers) to wake up and realize that in the same way homebuilders find value in having a general contractor, there’s value in having someone coordinate healthcare.

I also want a related concept, the “patient-centered medical home” being promoted by PCPCC. (Your “medical home” is a place where you “live,” medically. 46% of Americans have no medical home, PCPCC says.) You have any thoughts about that? A hot one for you, or does it miss your point?

First on my list would be something that boils down to “Participate – don’t dictate.” Next would be to recognize that there are no insurance billing codes for all the emailing and coordination work, so you’re doing it for free, gratis, pro bono, out of the goodness of your heart. (Si? No?)

I see parallels with the guidelines for patient-provider email authored by Danny Sands more than 10 years ago. Not the least is “Be concise.”

in short, i likened my medical experience as a patient with a somewhat uncommon medical predicament to that famous poem about the blind men and the elephant.

http://wrekehavoc.wordpress.com/2008/08/06/no-rain/

today, i met with a doc who actually can see the entire elephant that is my illness. and i think that may make all the difference.

i hope.

That said, most of us are basically outpatient doctors. In that setting it’s very different. Few things in my practice get me more hot and bothered than the expectation that I’ve personally spoken to every member of the extended care team for every patient to whom I’ve made a recommendation. Is it not enough that I’ve met for an hour with the patient, engaged her with respect as her consultant and made recommendations (not demands) about how to proceed; that I’ve spent additional time reviewing outside records and tests (often paper, sometimes electronic); written a note to her and to her primary care doctor then emailed that note to them and copied her psychiatrist, rheumatologist, oncologist, social worker and cognitive therapist; and modified my recommendations a few days later when the psychiatrist finally gets back to me with his concerns? After all that, you would have me call them all individually? Maybe I could set up a conference call, or better yet, have a group meeting someplace convenient for all involved (hard to do, since this team is distributed over a 50 mile radius).

In fact, I have been asked to do just that from some of my empowered patients. People who I otherwise respect and treat as the boss, where I am a member of their team. But, it seems to me that unless you are promoting some kind of “boutique” or “concierge” practice, this is not feasible. There must be electronic methods to coordinate this team. I like the idea of a Personal Health Record with built-in team maintenance functions, but there are other solutions too. If that makes me a pariah among my Participatory Medicine peers, then so be it!

There’s a nice discussion in the book about the fact that the patient (and I’ll add, the family) is the only common intersection of information in a hospital. Maybe that shouldn’t be the case, or maybe it should.

Either way, when patients and families are told directly or indirectly to not be involved in their care because it’s being handled, at the very least energy is being wasted and at the most harm is created – what bond is stronger, the one between hospital staff and patient, or between parent and child, patient and loved ones, and why would anyone want to interfere with that bond at any point in a person’s life, especially when they are the hospital?

I’m with Dave on logistics and communications issues. It boils down to a simple human trait – “we always make time for what’s important.”

We seem to be able to coordinate the ordering of imaging studies and consultants just fine, because those are perceived as important. We don’t seem to measure how important those things are on an ongoing basis, though. It’s assumed. What if we put a chart up by the bedside that measured, “Amount of radiation administered during this hospitalization” and ask nurses, doctors, and patient/family to judge how many of those rads were necessary?

Lastly, I am a huge fan of asking “Why?” five times until we figure things out. When a family member says, “What do you mean you didn’t talk to the other doctors?” We should ask “why” that’s important to them. Could it be that they have no information about anything that’s going on the hospitalization at all, and they don’t know what to ask for?

The data that I’ve seen tells us that most people do not want to unduly burden health care teams. They know they are busy. I think it was in Brownlee’s book where they talked about “crazy mothers” and the comment was, “…and nothing makes a mother crazy more than not telling her what’s happening to her child.”

Just a few things to think about. As we wire our hospitals, let’s allow patients and families access to the same information their care teams are using to take great care of them and see if it makes a difference in our perception of what the most important activities are,

Ted