IBHT Future of Technology in Behavioral Health
November 1, 2005, Pittsburgh, PA

The Future of Technology-Enabled Consumer Self-Help
Communication and Community

Sylvia Caras, PhD

My name is Sylvia Caras, I live in Santa Cruz, California. My primary work has been developing an e community of people who experience mood swings, fear, voices and visions

I learned Boolean algebra in the 50's, patched in hex in the 60's, and received my first email in 1993.

I also have a consumer credential: I have four diagnoses, have been in six hospitals, three times against my will; I've been handcuffed, electroshocked and chemically restrained. This was quite damaging. Then using email changed my life. For me, the path was finding others, getting and giving support, and then turning from victim to advocate.

And I have a point of view: I join with many in insisting that all medical interventions must have full and informed consent and any exception is a human rights violation, for when there is treatment of adults without legal consent the system has failed; when the legal capacity of adults is overridden, the system has failed. That's when people turn to self-help. And today that means also turning to technology. (1)

I was asked to talk a little about what has already happened.

Then I want to speculate on what might be next.

But to think about the future, I have to start with the past. I'll provide a little background, 90 seconds about disability models, 90 seconds of history about self-help, a bit about what I and others have done, some comments specific to behavioral health technologies and what you can do now, some imaginings about what might be next in the near term, guesses for the longer and far term, and conclude with a few ideas I hope you'll remember. Everything I'm reading is on the web where I've also placed links to some resources that might interest you. Much of what I'm saying is a compilation of the ideas of others. I'm not citing now, orally; the written paper has footnotes.

First, ways to understand disability -

Disability policy scholars describe four models of disability: (1) A moral model which regards disability as the result of sin; (2) A medical model which regards disability as a defect or sickness which must cured; (3) A rehabilitation model which regards the disability as a deficiency that must be fixed; and (4) the social or disability model, under which "the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities overlooking the large variations within the disability community." (2)

It's long past time for behavioral health to look at the social model, to focus in a public health way on the trauma created by family violence and incest and the harm that comes from segregating people with psychiatric disabilities. Behavioral health now uses the third, medical, rehabilitation and recovery model. As you can see, there's lots to overcome. Many have turned to self-help.

In the twentieth century, as some societies moved from manufacturing to service, in the developed world the self help movement and the human rights movement parented the mental patient movement. This new movement inherited the self-help principles of volunteering, mutuality, valuing the experiential, and deflating professional privilege, along with the civil rights focus of other disability rights, gay rights, and women's movement groups and was nurtured by the politics of empowerment in an increasingly self-help oriented society.

In the 60's, the mental patient movement challenged psychiatry's hold on explaining behavior but remained separatist. By the 80's, diagnosed people were changing the mental health system from within. Some groups maintained a strong anti-psychiatry ideology; society was urged to increase social acceptance of human diversity. Some groups developed institutional collaborations or at least interactions - partnerships.

Either way, there is a shared user value base of self-determination, dignity, hope, reciprocity, witnessing, spirituality, diversity, ... and personal competence is connected with a desire for and a willingness to take public action.

And the internet is certainly about public action!

Online community for People Who began in the early 90's. There were consumer-oriented BBSs in New York City and Washington State. There were Usenet news groups like a.s.d (alt.support.depression), and Walkers and Pendulum were the first email discussion groups for mood disorders. People Who sent its first Internet message to 17 people end-January, 1994. A month after that first message I wrote "I do not plan to make this my career, but am excited and proud of the birthing, ... it is remarkable how all of this is taking shape. It seems to have a life of its own." Today Yahoo provides free email list software; Google provides free blog space; many email providers give space for customers to upload personal web pages and personal health records.  Indeed a life of its own.

Because marginalized groups use information and communication technologies (ICT) to create human networks and a power shift that counteracts the social inequality dynamics that a knowledge gap creates. More specifically, like others with new and chronic health conditions, people with psychiatric diagnoses use the internet to keep up with the breaking news about their DSM codes, the other effects of their medications, and what others are saying helps and hinders, and find relief in admitting openly to madness.

And here's where you come in. You can help by making sure your software design is intuitive and accessible. Despite the conference titles and your emphasis, not much of this is unique to mental health. Because health is seamless, carving out behavioral health, while it does increase funding streams, also fosters prejudice. The non-compliance rates for people who experience mood swings, fear, voices and visions are no worse than "Two out of five seniors (who) don't take medicine as prescribed." (3) Similarly with the non-violence rates. Exceptions are mostly fueled by drugs . It's advocates for more dollars, a medical model, and the media, who perpetuate the common and outrageous error that we are so different. Saying our data confidentiality needs are greater is based on that kind of prejudice. You are right, today there are consequences for disclosing. However, I would not like to support a system that perpetuates that kind of discrimination. Just as behavioral health treatment should be integrated into primary care, so should behavioral health software set the high standard for all health care software.

A service provider may pay money to buy your software but the end-user is me. I hope tomorrow will bring fewer one-size-fits-all blockbuster packages. When you design, don't plug me into a top down algorithm or a phone tree. When you design remember that bigger isn't always better, that both consumers and providers may have legacy hardware and legacy software systems and dial-up access. When you design, ensure that the information belongs to the consumer.

I know there will be security breaches. It is lying to say a system is secure. The system must be honest and transparent, must have in place a way to watch, warn and inform within, oh, 60 minutes, of any loss of personal information. And make sure when you sell, that your customers have good firewalls in place.

Both for personal health records (PHR) and electronic health records (EHR), local and national tools should be harmonized, inter-operable, part of a coherent infrastructure, and easy. A user should only enter relevant data once to propagate for all parts of the system, must have direct access to annotate, to correct, there must be end-user and provider ability for tiered permissions and access to record components separately, software should change the point-of-view of the record depending on who is looking at it. Outcomes means consumers report on what they wanted and what they got.

Because of email's voluntary nature, it just builds in the fundamental value that all interventions must have full and informed consent. Think about your program facilitating email between consumers and the provider's system for appointment scheduling, for medication refills, for access to clinicians, for crisis support, immediate crisis support, crisis support within 90 seconds. Think what that might do to calm down a situation.

Psychiatric disability is isolating. Not having internet access increases isolation. Systems must promote digital inclusion, social equity and local development. Every thing you read about rural isolated developing world poverty applies to inner cities and people who live on welfare benefits. The physical spaces of public service providers and county mental health centers can become spaces that provide individuals, community groups and organizations with public access to computers and broadband. (4) Success depends on appropriate technology, appropriate change agents, community participation, availability of pro-poor services, and campaigns to raise awareness. (5)  (6)

OK. That's a lot of your part of the future.

Here are some of the things on my mind.

I expect to see all technology used in a broader way . (7)

For example, think about a cell phone with medication alarm reminder and for instant access to support. Think about using a cell phone as a diabetes tester, to monitor blood pressure, to transmit results to the electronic record. Think about SmartCards to draw down from an SSI benefit. Think about how to design for other languages and keyboards for other scripts.    Think about brains interfacing with computers (8).

Think about the increase in the use of electric shock, magnet therapies are being developed, there's a vagus nerve stimulator implant (9), there's talk of continuous monitoring humans with embedded rfid tags (10), embedded IV's can release as-wanted or as-needed behavior control drugs, electronics can monitor change of state through electronic hats and helmets, embedded electronic chips (11) , ...

Technology should enable policy choices and underpinning everything ought to be an ethical knowledge management policy. For the future will be fast. The future will be mobile. The future will be rapid-cycling, volatile, reactive, decentralized, and always on. Some of the future concepts will relate to the new optical wireless infrastructure. Tools will be smaller, individualized, and open. Self-help will be untethered, wireless, voice will be an i/o option, content will be in quick, quick bytes ... There will be no privacy.  (12), (13), (14), (15)

And as all this happens, there will be a pull to put on the brakes. As more and more are diagnosed and the pharmaceutical industry prevails in a culture that medicalizes problems of living and wants a pill for a quick fix, there will be a reaction in the opposite direction. For despite the wonders of technology and mass approaches, narrative is the data gold standard, my anecdote, my story. Think about software narrative analysis for themes, for I am the evidence.   Build an architecture of participation.

I'd be pleased if you went home

   believing that health is seamless;

   agreeing that systems must be fully accessible;

   remembering that design must be simple and light;

    and above all, not forgetting the people , the people who experience mood swings, fear, voices and visions.




The general and internet history of self-help is excerpted from Owning Madness, www.peoplewho.org/sylvia/om .

1. A positive association was identified between frequency of Internet use and self-assessed degree of self-determination.

Information Technology Attitudes and Behaviors Among Individuals with Psychiatric Disabilities Who Use the Internet: Results of a Web-Based Survey.  Judith A. Cook, Genevieve Fitzgibbon, Drew Batteiger, Dennis D. Grey, Sylvia Caras, Howard Dansky, & Frances Priester.  Disability Studies Quarterly, Spring 2005, 25: 2

2. http://www.peoplewho.org/debate/kaplan.htm

3. The Nation's Health, June/July 2005, p 12 (report of survey of Medicare beneficiaries).

4. Bruno Oudet, Jean-Pierre, Reaching the Poorest in Their Own Environment: The Internet in the Street Project, MIT ITID 2:2, Winter 2004.

5. Simone Cecchini and Monica Raina, Electronic government and the rural poor: the case of Gyandoot, MIT ITID 2:2, Winter 2004, p 65

6.  I interviewed users of the computer lab at the Santa Cruz Mental Health Client Action Network.  They wanted home acess, donated laptops instead of desktops because their living spaces are small, donated highspeed ISP, interest-free loans to purchase what wasn't donated, noted the value for people with atypical diagnoses of internet research, were uncomfortable with the lack of privacy and limited time allowed at free internet sites like the public library, wanted space somewhere for storage of personal material, and the most frequently visited web sites were dating sites.  Which matches what SAMHSA's Curie says - people need a job, a home, a date.  And what was found in a San Diego focus group - the technlogy board and care residents wanted was first an iPod, then a cell phone.  In order "to be like everyone else."

7.   Shoplifting as Social Commentary: "Can I take it seriously as a strategy for changing the world? Not on its own and not as a form of political organizing. But as an embodied expression of the general spirit of open-source, file-sharing culture that could ultimately overwhelm systems of ownership in the increasingly digitized economy, it works."


8.  "Brains indeed work with electrical signals and can be tested and interfaced with computers."

Anne Foerst, quoted in Ritter, "Researchers show brain can signal world even if body can’t," Science and Theology News, July/August 2005, p 14

9.   VNS Therapy System (implanted device to treat depression)

10.  "The nascent brave new world embodied in the sweat patch or electronic ankle bracelets renders visible how the macro-medium of transcarceration interlocks the political rationalities of public social provision and criminal justice in ways that are unjust and likely to reinforce structures of exclusion. These are technologies especially adapted for continuous monitoring, producing infinite seas of data on which enclaved islands peopled by similarly dangerous individuals float. Like Kafka’s writing-torture machine in the penal colony, they are technologies of inscription administered by tyrants who seem barely cognizant of their effects on the lived realities of people whose stories they overwrite."

Nancy D Campbell, "Suspect Technologies: Scrutinizing the Intersection of Science, Technology, and Policy," Science Technology and Human Values, 30:3, Summer 2005, 374 - 402

11.  Former HHS Secretary Tommy Thompson last week announced that he has joined the board of directors of Florida-based VeriChip and will be implanted with a microchip made by the company that will provide access to his medical information, the Philadelphia Inquirer reports.  (July 19, 2005)

12.  In more and more walks of life, if what you want to do is not trackable, you can't do it. Most consumers have had the experience of trying to buy something negligible -- a pack of gum, say -  and being told by a cashier that it's impossible because ''the computer is down.'' It now seems quaint that after the Oklahoma City bombing in 1995, Congress argued over whether ''taggants'' should be required in explosives to make them traceable. Today everything is traceable. Altered plant DNA is embedded in textiles to identify them as American. Man-made particles with spectroscopic ''signatures'' can be used, for example, as ''security tags'' for jewels. The information collected about consumers is the most sophisticated and confusing taggant of all. It is a marvelous tool, a real timesaver and a kind of electronic bracelet that turns the entire world into a place where we are living under house arrest.

Christopher Caldwell,  A Pass on Privacy?,  July 17, 2005

13.  Medicare in an "unprecedented move" is expected to announce plans to provide its VistA-Office electronic health records software to physicians at no charge to help them computerize their medical practices.  NYT, 7/21, 2005

14.  "Cell phones know whom you called and which calls you dodged, but they can also record where you went, how much sleep you got and predict what you're going to do next."   Wired News, July 2005

15.  "The information collected about consumers is the most sophisticated and confusing taggant of all. It is a marvelous tool, a real timesaver and a kind of electronic bracelet that turns the entire world into a place where we are living under house arrest."


16.  A single sign-on standard from a digital identity for a multiplicity of personal services will be the cornerstone of the new open web. Interconnected social networks will form a mesh. The personalized online experience will drive a vibrant, distributed, decentralized world created by an architecture of participation.

Marc Canter, Breaking the web wide open!, Alwayson, Fall, 2005, p 16

17.  For the poorest areas, there might be a threshold of investment in technology and infrastructure that must be achieved for the divide can be narrowed.

Catherine Mann, Information Technology  and International Development, ITID, 1:2, Winter, 2003, p 67