Technology should promote patient involvement not replace it

This post came as a comment by SR to Dr. Kibbe’s piece on electronic medical records. It’s a great consumer perspective and worth reprinting in full. — THCB Staff

Health Care consumers and patients have a wide range of interests,
needs and values that vary across our lifespans and circumstances and
hopefully there will be many different tools, products and services
provided to both providers and users of health care.

For example, my 70-year-old retired father is the head of a neighborhood
wellness program with over 3,000 people and maintained a family blog
during my mom’s cancer treatment but doesn’t own a cell phone and would
rarely change physicians despite differences in quality. I am rarely
ill, and yet expect SMS alerts if a lab test is done and want my
clinical records to link with my Nike tracker in my shoe as well as
apps on my Iphone.

I envision a system similar to the financial sector (bad example
right now perhaps) where you are able to move your information from
clinician to clinician (online bank statements = EMR) supplement that
with information gathered via other ancillary providers (investment
account at E-trade) take all of that information into my PHR (without
entering most of the data so it is similar to downloading into
Quicken) adding in some personal data (from my nike+ sensor and mobile
apps that track my diet and yoga classes) and generate reports (like
turbo tax) to share with some of my providers

In the banking system transactions happen offline via a debit card
so I really want a smart card (lifemed card) loaded with my current
problem list, meds, demographic information so that I never ever again
have to fill out a clipboard. I also don’t care who "owns" the data I
care that I can move it to where I need it to be in real time and it is
safe, secure and presented in a way that I can understand.

I don’t want to have to go to medical school on the side, spend
hours filtering through social networking sites to determine if someone
works for a drug company. Are the outcomes any better if I do? I expect
health care providers to provide me with the best links to information
(Information Therapy) and if I need social support provide me with the
best offline resources to real people as well as online.

I also don’t want to shop for the highest quality lowest cost
providers like I am purchasing a Tv since I will rarely be in a
position to make a change based on that information. If my spouse has a
heart attack or a parent has cancer I expect all providers to give us
the highest quality care but it would be great if clinical alerts were
sent to me as well as my providers. (this would stress my parents out
though if they got them) I don’t want to be placed in the position of
changing a hospital or care giver when a spouse is having a HA because
I just goggle searched the hospitals infection rate. (I might use
quality metrics to buy insurance or for an elective procedure but
question what some metrics measure? High quality of providers or just
those with high income patients?)

Technology is not the "solution" to our health care un-system (as
Europe is able to accomplish better outcomes without EMR’s or PHR’s)
but the commitment to include patients in their own health care
management that technology allows us is a reflection of that shift.
Information is just the first step. It has to be transformed into
knowledge and knowledge into behavior change and that requires mass
customization of the IT tools and surrounding services.

There is more to health care then transactions of data and at its
core healing takes place in the context of a series of relationships
and those are based on trust not technology.

(FYI full disclosure – I actually implement EMR’s for a living,
serve on State quality and patient safety boards; National HIT
committees and I am a strong consumer advocate. I am very well aware of
the best practices in HIT as well as the very real limitations of HIT)