PHR may be the driver of the technology adoption.

American Health Information Community (AHIC), currently HHS advisory committee, will be privatized within 18 months.


California Information Management Conference
Los Angeles, April 11 - 12

Sylvia Caras, PhD

Familiar faces: John M (Bipolar newsletter), Delphine Brody, Michael McPherson, Karen Hart (family), Paul Cumming

Plenary and demonstrations are standing-room, about 400 at this attractive Marriott hotel and golf course, in the lobby drinking water flavored with pineapple slices, and a bowl of apples and oranges, poor ventilation system, plenary room hot and stale, my bathroom has a noisy fan which runs whenever the light is on, corridors smell of detergents.

Sandra Goodwin, CIMH: others might not know as well as this audience that there is no health without mental health. (But the field has created this split, holding itself and those who use its services, separate, and now resents the consequences. Sylvia) IT will help consumers use the services provided. (I note the passive voice, consumers as subjects. Sylvia)

Kolodner, Health Information Technology: EHR is a subset of PHR. Interest in PHR may be the driver of the technology adoption. American Health Information Community (AHIC), currently HHS advisory committee, will be privatized within 18 months. (I’ve been following the controversies when ICANN moved from government to private. I’m wondering how this will evolve and also note here that this is a personal responsibility model that is being put forward. Sylvia) www.hhs.gov/healthit . Questions were only from consumer/family people here (John, Delphine, Michael, Karen).

Hotel guests leave room service trays outside their doors, in the corridors, for staff to collect. Often I’ve noticed unused single serving jars of mustard and ketchup and suppressed my urge to take the little bottles home. Just now it was harder to walk by - in the hall was a half round of brie, covered with plastic wrap, a half box of Carr’s crackers, and a easy-to-read note from the hotel to that guest, welcoming him back for another stay.

Sometimes I leave a tip in my room when I check out, not really knowing where it goes. Once in a while I see the cleaner, ask them to not clean with scented products. This time the first day I left $2 and a note about perfumes and when I returned I had a note back, an "OK" with a smiley in the "O". That made me smile!

I see no visible disabilities at this meeting, no signing, no Braille materials. I realize how successfully mental health has carved itself out of both health and disability, an island of protection and shame.

In the back of the plenary room is a table with plastic glasses and a large urn shrouded in a black tablecloth, just a spigot revealed. I wondered what was hiding, lifted the fabric, saw a red Rubbermaid Water Cooler, carefully replaced the fabric.

The room is almost as full as yesterday, some still standing in the back.

Boynton: presents Schwarzenneger health plan, mandatory individual insurance, employment based, cost help for others, ... as has been reported in many places. Disaster preparedness - big earthquake would lead to levee failure, lack of water, ... CA 100 % EHR in next ten years. State health IT deputy secretary to be appointed. E prescribing mandatory. We need to find a way to build trust. (I think it starts with transparency. Sylvia) Security will be statewide, not regional. Silos still exist; advisory groups get stalled.

Oprendeck, Renslo, Refowitz: CA MHSA plans which have been already reported. Refowtiz’s whole presentation used American Idol as an model and reference, joked about a character on meds (the whole audience laughed). Number one goal money. I don’t know what American Idol is so I understood very little of what he said and as I am sitting here listen to the allusions I’m feeling angry and lonely and isolated. This I would guess is analogous to cultural incompetency, an ingroup not communicating to all groups.

DMH handout - slide 26 of 34 - consumer and family empowerment projects guidelines - hardware, software, broadband, labs (kiosks), housing, wellness centers, computer literacy. ( I think these are good. I’m concerned that this is one small piece of the guidelines, that it seems like the CSS and Capital IT monies are merged, that using MHSA monies for further work on EHRs (health not just mental health) is supplantation, and that in the long run, since the proposals must come from the counties, that clients won’t get a share unless that county has a strong IT person or CNMHC circulates project suggestions. Sylvia)

At question time I offered myself/CNMHC as a resource for the consumer empowerment IT projects and ended by noting how uncomfortable I was that the joke about meds was made and that the room laughed along with the joke. I trembled inside for quite a while after, and am pleased I ‘stood tall’ when several people came up to thank me, and Mark Refowitz apologized.

Lori Ashcraft, Recovery Opportunity Center, 70% peer staff, recovery oriented.

I’m co-leading a consumer/family discussion with Ed Cohen and Karen Hart. 25 came; there was a good discussion. In my introductory remarks I said:

The quality of care in our session title affects the quality of life of people who cope with mood swings, fear, voices and visions. And this quality of our lives, of my life, sits in a global context, a context of human rights and of, in particular, the right to access to knowledge. We are living in a time when justice and social equality are spreading through the universalization of access to knowledge.

The internet is the right of way to that right to knowledge, and whether the internet is self-governing or jealously regulated, who profits from which copyrights, whose data is it, whose database, whose email - these are global, and contested, concerns.

For health, attitudes towards care have evolved so that today the patient makes the choices throughout alternative and complimentary medicine, throughout much of primary care, less so at specialty level, especially less so in psychiatry. The transparency that will come with electronic health records will empower end-users - we people who cope with mood swings, fear, voices and visions - who search for health information and participate in chats and groups just like the 80% of Americans who have searched for information on at least one of seventeen health topics in the PEW study I’m citing.

But in the client world, there’s not yet much awareness of what electronic health records will lead to. Paul and a few members of the client team. For me, that’s upsetting, and it may not have consequences. For there are advocates like Tom, like you (audience), and as well I know that our issues aren’t so very different from everyone’s issues - the first concerns expressed about any electronic record are privacy and choice.

About 100 stayed for the wrap up.

Some presentations will be at cimh.org

I went to a week long vipassana silent meditation retreat in Oregon.   I'm uploading this from Portland airport's free wifi.