Re: Patient-centered medicine & user-centered design

Hal,

I don't think any of the distress you felt from your hospital stay  
was due to usability issues or your lack of involvement in your own  
care so much as (dis)organized process issues that tend to be proper  
to places like hospitals, which offer highly complex, concatenated  
services that span incredibly diverse domains, personnel profiles and  
the occasional large ego.

Hospital IT, which could improve this well-documented problem,  
traditionally deals with bedpan provisioning, bookkeeping and  
document management pretty well. Unfortunately, it does not do  
medical process/risk management IT well at all. In a given facility,  
there is still (usually) enormous reliance on multiple legacy systems  
that don't work very well together by today's standards, information  
siloing between services, and well, as someone who was married for  
many years to a doctor who distrusted computers, I can maintain that  
many healthcare professionals prefer to do caring in the old- 
fashioned way.

But this does not address the subject of good, usable patient- 
oriented medical software, which still only exists in under-deployed  
beta or as a twinkle in some doctors' (or software developers') (or  
patients') eyes. Now that more and more medical care revolves around  
chronic care (this is a recent change and sign of our times), the  
need to coordinate healthcare between many professionals (a diabetic  
needs to be in contact with endocrinologists, cardiologists,  
podologists, nutritionists, et al who probably do not share records)  
has become a severe problem that is only beginning to be tackled. The  
obvious solution is to put the patient, not the doctor or nurse, at  
the center of a person's healthcare management careflow. This is  
hugely different than the current way of doing things and will have  
to be figured out in all the details. Mentalities will have to change.

If I have any advice to give, it would be fasten your seatbelt,  
devise your personas, and keep them in a safe place until whenever.

Regards,
Denny Adelman

PS: Some of your list of woes strikes me as the acts of overworked  
staff, which is what healthcare professionals tend to be. I'm not  
trying to justify these things, but outside the maternity ward,  
hospitals aren't generally happy places. Hope you are up and well.


> I was talking with my primary care physician today about how un- 
> patient-centered my recent hospital stay was. (See below for some  
> examples.) He mentioned a seminar or class he teaches for residents  
> about empathy and looking at medical care from the patient's point  
> of view. I'm so glad he mentioned this because the experience made  
> me want to find a way to apply what I know to fix the problem.
>
> I'm sure there's not a lot of medical literature about this.  
> Driving away, I started thinking about what there is in *our*  
> literature, and in our methodologies that could help him. For  
> example, maybe the idea of personas would be useful: they could  
> work together to create personas for Sally SeniorCitizen, Andy  
> Appendicitis, Uncle UnknownProblems and Polly Pregnant, and refer  
> to them in their discussions.
>
> Some of my consulting work has involved medical software and  
> hardware, and I've done usability testing with physicians. But this  
> is different. Have you done anything relevant that I could pass  
> along? Or have any ideas that seem appropriate?
>
> thanks-- hs
>
> A few examples of how un-patient-focused my hospital stay was.
> = I didn't mind having vitals checked every four hours around the  
> clock -- it seems useful, and I wasn't sleeping well anyway.
> = Nurses would do something and say they'd be back in (say) 20  
> minutes to check on the outcome, but it was much longer than that.
> = Someone came in during the night and started asking questions  
> without identifying himself -- how do I answer without knowing who  
> and what he is?
> = Two teams of doctors wanted to poke, probe and interview me when  
> I was just too cold and uncomfortable, so I had to ask them to  
> leave. They said they'd be back soon, but it was the next day.
> = Another doctor wouldn't tell me what I should order when I was  
> moved to a solid diet, he just vetoed all my suggestions; he said  
> he'd come back later instead of helping me right then, but he sent  
> a medical student three hours later. Etc.
>

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