with Scott Steffen
An easy flight from San Jose to Burbank gave me time to visit the Universal Studio City Walk (actual admission to the tour is $89) and remind myself of the sensory assault of smell, sound, color; this year there are not so many tourists.
The meeting started with breakfast but by 8:30 all the cut fruit was gone, the 9:00 demonstration was full to overflowing, the main room is full (maybe 500), Ive been meeting and greeting - Phillip C, Ruth Gravitt, Randy Hack, Phillipe, Paul Cumming, Karen Hart, Julie, Ron Manderscheid, Tom Trabin, Stephanie O, .... Sue B and Ann Arneill are on the program.
At Randys suggestion, we decided to announce a consumer and family meeting and announced that those interested should gather to set a time and place. Ron Manderscheid asked to come, and separately asked me to emphasize personal health records, which of course I am delighted to do.
Manderscheid: portals, access to individual health management resources has to be the future, current costs unsustainable, ONCHIT (Office of the National Coordinator for Health Information Technology) shortened to ONC (Office of the National Coordinator). PHR fundamental to that cost saving, self-management. Inadequate communication between public and private. Large national contracts take a long time for results to be reported out. Community collaboratives, local, some exist, for instance Kansas collaborative for depression. (Could also be affinity community. Consumer movement, consumer action, collaborative to end forced treatment, collaborative for phr, , ... ?)
Distributed a plan by Daniels and Adams about implementing the IOM report in mental health.
Even though my computer sees free WiFi, I cant connect, so will send this when I am home.
David Brailer by webcam, "live virtually" - flanked by US flag and blue and gold HHS/PHS standard sitting tall in navy suit and wine paisley tie at a table. A request for him to give a White House briefing this AM prevented his in-person appearance. Four health care goals - prevention; safe, effective, efficient, state-of-the-art; transparent especially in terms of cost and quality; mitigate public health threats -- health information technology required to attain these goals. Person-centered full health profile an asset of the patient, Records standardized, certified, networked (if you give an authorization), Rules developed for paper are different from those to be developed for electronics; policy group working on that (health information security and privacy collaborative - working with national governors association - watch whatever legislation is brought forward carefully. S.). Defining and protecting privacy in substance use and mental health is a social as well as a technical challenge. Every American should have secure messaging (through a browser; no technical barrier. (internet for all?! - Ive suggested for a while that internet access should be covered by health insurance. S.) Remote services and monitoring. Completely integrated medication records so any treater knows all that is being taken (though I know the advantages after Katrina, for VA, I would not like my medications integrated, do what I can to prevent that for myself, sometimes pay without insurance, with SSN, deliberately. S.). CalRHIO. PHR standards will be developed/certified in 2007 by ONC. No specialty specific models (yet) (should there be ?). A question demonstrated how mental health uses jargon that the rest of the world understands differently (Sue B, DBSA, asked a question about consumer involvement which I heard as consumer in the sense we use of consumer /survivor and he responded to as general health consumer, so the response was off her point.) Standardized systems and uniform data collection.
We held a consumer and family session, attended by Scott (Modesto), Karen Hart (Monterey, childrens advocate), Ruth, Deborah (childrens advocate), Gwen (LA, Ron Schraibers assistance), Phil C, me, and Ron Manderscheid, who pledged support for consumer and family driven PHR standards and information tools even from his new position in private industry. Also here at this meeting but otherwise busy, Randy, Sue, Paui. Ron M suggested we focus on how we will use data once we do have access; that data/information must be knowledge, actionable; he noted in drug development the focus is on maximum effectiveness and ease of administration; whats the analogy for People Who?
We were treated to a sit-down lunch: cold baked salmon in a lovely green salad, bread to dip in oil/vinegar and to spread with chopped seasoned olives and butter, tea, carrot cake in the vendor area, surrounded by software programs and other devices for service providers.
The VA personal health record has a self-assessment tool. The audience tittered when the speaker noted that some questioned whether people diagnosed with schizophrenia or bipolar disorder could self-assess. (I felt mild outrage and discouragement.)
Sue Bergstrom, DBSA, an experienced presenter, a Person Who as well as a family member (her sister suicided) told about DBSAs work, .... Website uses surveys often; she created one for this conference for PHR/EHR; she presented the results with lots of quotes and images, from the model of illness, unpleasant. She noted that one reason she wanted a personal health record was so that she could annotate medications that didn't work well for her so they wouldn't be prescribed. Later, this reason stayed with me, it seemed such a lack of agency, to need the documentation instead of a simple refusal.
Privacy: feds require an privacy impact statement for any new electronic data collection, record. All kinds of details for things to be careful about, protect, encrypt, firewalls, ... Differentiate between public records and publishable records. IT is asked to make what really are policy decisions about data access that have clinical impact. (One county is moving its hospital out of county government and under their Utility Commission.) Role based access controls. Data encrypted at rest? Notifying when there is a data blow-out is a best practice.
(I think we are asking the wrong question, putting energy in the wrong place. I think there is no privacy anymore, that we should focus on why a person cares, remove the shame, remove the value from the information, like legalizing drugs to remove the profit motive. Of course take the same kind of precautions you take with your home, your car, your wallet. The precautions just escalate as the hackers get smarter, or precautions like TSA precautions that impede travelers with questionable results. I did ask the question, broadly, but was unable to raise the discussion to a high enough level - the basic answer was thats just how it is, shame, prejudice, we need security, privacy, confidentiality. I was countered with identity theft <sigh>. If you can encrypt a file, do it. Password protect all attachment files. ...
And People Who are diagnosed paranoid! S.)
Listening to security, confidentiality, privacy, security, need-to-know, man-traps, escorts, security, encryption, vulnerability ... after having spoken up is discomforting. Im listening now for extraordinary suspiciousness and protection; I dont want to live in a military need-to-know environment of distrust and hierarchy. Im going to leave this session before the end.
Consumers and families sat together at the reception and continued our conversation - Randy, Ruth, Scott, Phillip, Karen, Julie, Gwen, joined by Phillipe and Olinda - while enjoying hors doeuvres of roast beef with sauces, smoked salmon with capers and chopped egg, phyllo with spinach and cheese, and in the hotel happy hour bar, meatballs in sauce and cheese. We ended up discussing social values that needed changing and sighed when we also realized there is no money to be made in changing social values.
I enjoyed the socializing and sharing and went to my room feeling Id talked to much, chastized myself also for staying up too late, not enough quiet time to regroup, woke this morning angry, ... then was told the hotel had replaced wallpaper in the ballroom yesterday, new carpeting, perfumed cleaning products, ... oh, yes, chemical sensitivities trigger this irritability every time! I changed my flight to mid-afternoon and added a note to the conference evaluation. Id like to see included in the contracts no refurbishing while consumers are there and a scent and smoke free request on the registration page.
The fruit at breakfast included something orange-colored, size/shape of a cherry tomato, tasted a combination of sweet and tangy, maybe like a cherry, but no pit. I dont know what it was.
Handon, DHS: CalMEND - computer-focused, evidence-driven effort to develop and implement a statewide mental health care management program. DMH, DHS, County Mental Health, DGS, DOC, DDS, UCMC, DASA plus VA, DOE, PERS, CIMH, CSMH ... and no clients? Well they do note a client and family member subcommittee (Id like to know who is on this. S.)
wireless standards - www.iee.org
Renslo: stakeholder feedback - make IT client and family member focused; consumer access to records; consumer access to computers; consumer input to electronic records; informational trainings and IT support; trust, permissions and security issues - HIPAA. Ideal electronic mental health information systems are culturally competent (touch screen, voice, ... ): accessible (ADA); available (access in public places, access at service delivery sites or in housing, access in remote/rural locations).
Lunch was from 12:30 to 1:45 but box lunches ran out by the time I got there at 1. A woman in charge was insisting she should bring me a sandwich and I could pick out the middle to accommodate the gluten-free food I'd asked for in advance but a kind waiter who was listening suggested a fruit plate and she acquiesced. I got to have a last chance to visit with Ruth, Gwen and Randy.
Under my suit jacket I was wearing a shell which I would never wear without the jacket. TSA asked me to take off my jacket. I was shocked, stammered "You want me to undress?" She grabbed my boarding pass, said "She won't take off her jacket. You aren't boarding any plane." and then I was wanded and patted and not able to keep an eye on my laptop and possessions. <sigh>. Another time I'll request a dressing room. The arbitrary (mis)use of authority is a challenge to me, makes me want to be literal, ask for special favors, in general be obstructionist. Oh, well. I did board the plane, and the extra check took only a few minutes more.