NMHA Internet Summit: Connect the Dots

Washington, DC, February 15, 2001

This report will be subjective: I’m typing on the plane home.

I took time the day before the meeting to visit the Disability Exhibit at the Smithsonian. What a rush to see Judi’s name on the wall, Dendron in the display case, ...

NMHA, in cooperation with the Internet Healthcare Coalition www.ihealthcoalition.org "assembled an outstanding and diverse group of experts and stakeholders to explore issues influencing the flow of mental health information on the Internet." People Who I knew: Celia Brown, Brian Coopper, Diane Engster, Marie Verna. Also there: Sue Bergeson, ED of NDMDA; Mary Guardiano, President of Freedom from Fear freedomfromfear.org ; Jerilyn Ross, ED of Anxiety Disorders Association; Jerry Radke, formerly a "loaned executive" from Lilly to NAMI, and now Acting ED; John Grohol and Storm King (now a Ph D and founder of Mental Health Online), Internet early-adopters with whom I e-mailed and collaborated as early as 1994; and Ron Manderscheid, consumer and family supporter from CMHS (who shaped the final outcome – read on). The event was held at the National Press Club. The context was "people seeking information on the Internet" (with people seeking each other not on the radar screen) and a concern with "quality" which really meant "evidence-based," "efficacious" and the process was consensus building, using the CogniScope (TM) system which I will describe a little.

We were provided with a briefing paper to read in advance. Brian Coopper and Vicki Smith had been interviewed as contributors, but I didn’t think the contents reflected either their Internet sophistication nor their advocacy positions - for instance the word "stigma" was used 15 times in the paper’s 22 pages, it didn’t state its biological bias, I thought it had a paternalistic tone, and it conceived of the Internet as a one-way model, without supporting interaction, peer support, really equating the World Wide Web with the Internet.

On the way over, the taxi driver asked what event I was going to, I replied ... m h, ... he said "one in five ..." but what he said was "one in five women" and I smiled inside at how he had converted the information. Then he told me about his girlfriend who has OCD and is helped some by Zoloft and I made a few suggestions for her to find peers and information.

The event got off to a late start as people were delayed by traffic and enjoying greeting each other. After welcomes, and with breaks and a delicious lunch in between, we generated 57 answers to the "Triggering Question: What are guiding principles that will protect and promote the interests of people seeking mental health information on the Internet, if adopted by the community of stakeholders."

There was quite a bit of resistance to the process, wanting to change it before even trying it, fussing about clarifications of every tiny detail - "what about?", "what if?", underlying issues about retaining power for the professional and commercial organizations, participants taking time to speak in order to show others how knowledgeable and special they were. I found the jockeying for position of others really triggered *me,* a part of me wanted to do it if they were, be competitive, and the better part of me wished they would stop so we could move on and get to work. It was interesting to me how this differed from People Who meetings - what I saw was "we" are more forthright and honest in our "disruptiveness" and "they" were better able to keep process going and end up with a result despite the behaviors. There was a lot of clutching to the old hierarchical models and insisting of the unique needs of the behavioral health field and its clients.

There was one very angry lady: "the charlatans out there"

Celia was helpful in ensuring that one principle was that information must be delivered in a cultural context.

Part of the process was to acknowledge "authorship" of each principle, so there were a considerable number that said the same thing in different words. We then were given five stickers each and voted for what we thought was most important. Then, for each of the top rated, we voted "yes" or "no" to the question, if principle x were adopted would it help principle y be adopted. This process was computer-facilitated with several typists, large fonts, good display projection, and some print-outs. This "if:then" part of the process was very hard, generated considerable discussion and a lot of clarifications of the principles and was very valuable. Integral to it was the authorship concept and each if there was confusion, each author explained what he meant.

I think the findings would be more accurate if we had matched each generated principle against each other one, but of course there were too many to do that. My concern is that so many similar ideas were written in different principles that they each could have gotten a few votes, not risen to the top, and yet the underlying idea might have been fundamental.

I have experienced processes that didn’t emphasize authorship, that clustered and combined the content generated, and I need to order so many ideas for myself, so my five guiding principles, only mine, are that a web page should be: transparent, accessible, user-friendly, linked to peers, and diverse. The E-Health principles are "communication, data, empowerment and interactivity." I’ve set up goodweb@topica.com if you would like to e mail goodweb-subscribe@topica.com and discuss for a little while generating five or ten principles People Who think are fundamental.

At one point I commented that the word "protect" was so paternalistic and asked the author if that was what he meant. A firm "yes." I asked another if he would be willing to speak of m h and other health or m h and all health because I felt speaking about m h and physical health was one more thing that helped to separate and discriminate. He said "no, it was important to distinguish". I asked another where the place of narrative and anecdote were in the idea of treatments proven "efficacious." <sigh>

CogniScope is also meant to be a learning process. I learned how locked in some people are, how they don’t, maybe even can’t, listen. And as others acted closed, I too became more focused on my own agenda and less open to understanding those of the others. <another sigh>

As we were generating principles, I began to wonder if there were a way to have "key word" standards so that search engines could generate hits with more relevance and accuracy. A mental health set of standards for key wording pages and sites? Feasible?

Thought police?

The concerns about privacy, worded in several ways, got far and away the most stickers, but what was intriguing was that it wasn’t at all "salient" - it drove no other principles and no other principles resulted it privacy being enhanced. Bernard Lo said, in Issue 4 2000 of Advances, "Absolute protection is a fruitless goal. We are never going to get there." (p 4)

"Principle 42: Develop a consumer-operated website that has the technology to assess credibility of information on other websites."

"Principle 35: Establish a principle of transparency - the who, what and where - of the substance and sponsorship of the site." (I’m not positive if this is the one; there are several about transparency that are very similar.)

The result of the day’s work was that a consumer-operated website, and transparency, are the core principles that would drive the other valued principles. A consumer-operated website. Suggest by CMHS’ Ron Manderscheid. And explained over and over again as the understanding sunk in, and the resistances rose, about yes, consumer-operated, consumers evaluating mental health information, ... the basic core finding. Wow!

I arrived back home at the San Jose airport at 5 PM. I had forgotten this was a holiday weekend. There were so many people inside coming and going that it was hard to wheel my suitcase to the door, and the traffic within the airport streets was practically at gridlock. I got into some pleasant "travel warrior" stories waiting for the shuttle bus.

In preparation for thsi meeting, I’d been thinking a lot about us on the Internet and next directions. Here’s where I am so far:

Models are changing
from file hierarchy
to swarm, stream, crowd;
stream is simpler, more intuitive
access, not ownership
coalescing decreases choice, recollects power

Material should
be time ordered
be organized
be painless to browse
provide links to local resources
create engagement
be organized so that search gets to right vicinity

Information is not best processed from the source to my mind. The mediation and management and processing information is a social function which happens in exchanges with others. Electronically this is via asynchronous e mail or synchronous chat.

web pages that offer an easily accessible and well-structured linkage to the broad range of available electronic resources on the web SIMPLE w3w standards global (text browsers, audio output, alt tags, fast load)

no more than three clicks deep

pages must state their bias - family, pharmaceutical, anti-psychiatry, biological

organize, don’t duplicate

branding

Even though the Internet is blind to race, color, gender, attention must still be paid to accessible language and construction

I expect a health information web site to convey information in an effective and empowering and varied ways.

" A key challenge for the modern organization is to clearly measure the cost versus the benefit of the content it creates. This is not an easy task, but if you can't measure the key resource that delivers you benefit and costs you money, then you can't manage."

 

about us lists documents madness readingroom sylvia