Eclectic Views

    
What are "e-patients?" Who are the people who make up the e-patients group,
what are their goals, and what's this White Paper they've been working on?
  

    

According the http://e-patients.net web site, Dr. Tom Ferguson -- who died
in the spring of 2006 of multiple myeloma -- created the term e-patients "to
describe individuals who are equipped, enabled, empowered and engaged in
their health and health care decisions. He envisioned health care as an
equal partnership between e-patients and health professionals and systems
that support them."

Before Tom's death, he was writing the White Paper
(http://www.e-patients.net/e-Patients_White_Paper.pdf)
in consultation with the group of advisors he dubbed the e-Patient Scholars
Working Group. Members of this group join us now to talk about what they're
doing and what the hope to accomplish.

Our leader for this conversation is Jon Lebkowsky. Jon is currently the CEO
at Polycot.com. He cofounded FringeWare.inc, the Austin Wireless City, and
the National Social Software Alliance. He's written about technology in
various media publications, including Wired, Mondo 2000, and Fringe Ware
Review.

Welcome, Jon, and welcome to all the e-patient group members who'll be
joining us over the next two weeks. Please introduce yourselves so we'll
know who you are!
  

    
Hello, all! I'll start by explaining my relationship to the e-Patient
Scholars Working Group. I knew Tom Ferguson for years, and several of
our first meetings, in the early 90s, were at Internet-related events
in Austin.  Tom, who had published a magazine called Medical Self-Care,
and had edited medical sections of the Whole Earth Catalog, saw early
on the potential to create online communities and information resources
to support patient empowerment.  He wrote and talked about this for
years, and his thinking and investigation in this realm culminated in
his proposal for the white paper mentioned above. He asked me to help
built a web presence and blog for the paper, which he saw as a step in
the evolution of a patient empowerment movement. Tom introduced me to
his working group shortly before his untimely death. The group
committed to complete the white paper, launch the blog, and help
realize Tom's vision of a stronger partnership between patients and
physicians, a more significant role for patients in their treatment.

Perhaps we should start by asking our guests to introduce themselves
and tell their own stories about how they got involved with the working
group...
  

    
I work as a researcher for the Pew Internet & American Life Project,
which is a non-profit, non-partisan organization studying the social
impact of the internet. My background includes anthropology,
journalism, and early 90s dot-com work (before I took shelter in the
dot-org world).

I met Tom Ferguson when my boss, Lee Rainie, was invited to debate him
on the radio about the findings of our first health report in November
2000. Less a debate than a meeting of the minds, Lee immediately hired
Tom to advise us on how best to measure & track this online health
care revolution. Tom introduced me to the other members of the working
group who have each helped me navigate the study of the internet's
(significant) impact on health & health care.
  

    
I founded ACOR (http://acor.org) in late 1995. ACOR is a large group
of online communities, each dealing with a specific type of cancer. The
communities have between 100 and 3000 members, sometimes representing
a very significant percentage of the patients suffering from a rare
disease. 

I met Tom in 1997 at the Harvard medical school cybermedicine
conference. While ACOR number of participants was exploding most of the
health professionals at the time were unaware of our activity and
almost universally vehemently against unmoderated online patient
groups. 

Tom in his incredible wisdom had already understood the great value of
the partnership between open-minded clinicians and informed patients.
He was already theorizing about how the informed patients impact on the
entire system (see http://tinyurl.com/2ga797 , "Online patient-helpers
and physicians working together: a new partnership for high quality
health care". We instantly became close friends. It was absolutely like
I had just found my alter ego. Working with Tom and every one of his
advisors has been a mind transforming experience.  

I am a very strong promoter of the development of quality e-Health
research, because health professionals will not embrace e-patients
unless they have validated data proving their importance.

Since starting ACOR I have been constantly surprised by new
developments coming from informed patients who have decided to apply
their great intelligence and expertise to try solving problems in the
healthcare system they believe minimize their chance to get optimal
care to them or their loved ones. 

I am on record saying that these completely unplanned innovations are
of much bigger significance to the reformulation of the entire
healthcare system than most of the current Health 2.0 applications. For
the most part those seem mostly a web-centric repackaging of what has
been done, for a long time, quietly and very successfully by many
online communities. I am also on record for saying that too much
emphasis on technology takes away from an emphasis on the human aspect
of internet-mediated medical communication and consequently limits the
beneficial effect of technology-mediated communication. 
  

    
I completely agree. In general, when the Internet industry is booming
and investors are interested, we start focusing too much on the
technology, because there are so many new technologies hoping to
attract users and money. It seems to me, however, that what
differentiates sites in this inherently social environment is not how
innovative they are as technologies, but how well they support
conversations and relationships.

Is anyone here aware of any "health 2.0" applications that stand out
as particularly innovative?
  

    
If you ask if I have seen any Health 2.0 application that enhance the
way or the quality of the conversations compared to what already
exists, the answer is unfortunately a resounding "No". If, OTOH, you
ask if I have seen an Health 2.0 application that adds something
resolutely innovative to the mix of resources available to patients and
caregivers then I have to say that Patientslikeme.com has added a new
way/interface to collect and share a lot of information about patients
experiences with their disease. But even though it is, IMHO, highly
innovative it is not a place where someone suffering from MS
(Patientlikeme is currently offering 4 communities, one of those is for
MS) can get all the answers. I feel like giving you a second and
almost facetious answer to your question. I have seen a revolutionary
health 2.0 application at work now for many years. It is one of the
most useful internet applications I know because it absolutely simplify
the communication process when people mention external resources URLs.
Health related URLs are notoriously long and are often longer than a
single line, breaking down in 2 or more lines when mentioned in written
conversations, making the links unusable by many. Tinyurl.com
simplifies the process and guarantees that the URL you mention will be
clickable by those reading your communication.

I think the future will demonstrate that the real innovation will come
when we will have an aggregation site offering many Open Services
(tinyurl is an example of an open service), just like great innovation
has come in the software world from open source and the access to a few
large aggregation sites offering access to the latest and greatest
source code.  
  

    
(Note: Offsite readers with questions or comments may send them to
<prevue-hosts@well.com> to have them added to this conversation)
  

    
This is an amazing subject, and thanks to all who've made it possible.

What has been the response (if any) from the health insurance industry
to this concept?
  

    
Gilles talked about something on our private list that got me
thinking... 

Web 2.0/Health 2.0 is supposedly about providing people with more ways
to interconnect with one another as individuals through empowering
publishing and social networking tools. But this is largely marketing
hype, jazzed up with 2.0-style graphics and empty business plans that
have no "there" there (e.g., Facebook). If 2.0 is truly about
individuals connecting with one another, there's nothing more powerful
and simple than a lot of old online technologies -- mailing lists
(email!) and message boards. 

Both of these technologies allow people to share unlimited amounts of
information with other individuals and easily allow you to find others
who are similar to you because they offer a directory structure through
their very names (no need to rely on semantics or technology to do the
finding for you). These remain underrated and undervalued in the 2.0
world.

2.0 seems good at pulling together people's data, but even then, such
data can't be used for any scientific, empirical judgments. Why?
Because it's based upon very limited numbers of people and is not
randomized (e.g., it is biased in ways we don't yet know [e.g.,
responder bias versus non-responders; proactive, aggressive patients
versus sedentary, conservative patients]). 

So while patientslikeme has long-term potential, its population
remains so small as to present a non-representative sample of people
taking part in its universe (skewing whatever data it's providing). And
this is the current problem with virtually all online rating services
in the 2.0 attempting to rate treatments or such.

So there's a lot of work to be done in the Health 2.0 side of things
to make this stuff really empowering to patients. 
  

    
Regarding the health insurance industry question:

I'm not sure there has been an "industry" response, but you might be
interested in checking out a project called Patient Centered Health
Information Technology (www.pchit.org). Health plans are one of the
project's areas of interest.

There is an idea afoot that consumers who are empowered by information
are able to make better choices about health plans (and save
themselves, their employers, etc. some money). When I get into
conversations about that I often end up talking about who's NOT online
(people age 70+, recent immigrants, people with less than a high school
education) but that may be a defense mechanism since I don't want to
accidentally become a health care industry pundit.
  

    

"Health 2.0" is an interesting term!   The sharing versus privacy balance
is so complex in this environment.  So if I want to say I'm a patient of
doctor whoever and my diagnosis was whatsit, and I want to share 
my opinion of the doctor's work, but I don't really want to give the 
groady details of my condition to my friends and the world, we have 
issues with the authenticity of my feedback, my reputation in the 
specific context as a reporter/judge of medical care, and the protection 
of my identity from those I don't want to trust all at the same time.  
That's a pretty interesting permission/trust combination and I am not 
sure I've seen it designed-for.  

On the other hand, I woud thing that the good new is that simply having 
closed discussion areas (similar to WELL private conferences or 
meatspace twelve step or therapy groups, for example) is good enough for 
many people much of the time.  

Say more!
  

    
I apologize for my sloppy typing. This is quite interesting!
  

    
Yes, I talk to at least one reporter per week who is calling to get a
quote from me about the popularity of health info online so they can
write about a new "community" site and/or Health 2.0. Part of my job
is
to provide that quote (the bait) but also to tell them about the long
history of self-care and online community (the switch). 

I would love to learn more from *this* community about how you
gather/trade health info and what advice you have for newcomers to
online social space (be it discussion forums, blogs, wikis, whatever).
There are few newbies in the classic sense these days since 70% of
adults and 93% of teens are online (and have been for years) but many
people are still learning about how to present themselves online. 
  

    
My husband, Dr. Alan Greene and I founded www.DrGreene.com in 1995 as
a way for him to extend office visits with his own patients.  The site
quick “out-grew” his small practice (after all “www” does stand for
“world wide web”). In 1997 we began our first move from an expert Q&A
format and began daily live chat sessions on iVillage’s ParentSoup.  We
also participated in the discussion boards there – helping pave the
way for the Health 2.0 movement. 

In 1999 Alan and Doc Tom were given awards from Intel for their
leadership in the online health movement.  We met Doc Tom at the awards
ceremony in New York and became fast and lasting friends.

Over the years that followed we looked forward to our times of sharing
ideas with Doc Tom.  Any time with him was a spring board for new
ideas.  We also called on Doc Tom when facing tough decisions about
next steps for DrGreene.com. 

We were pleased to be invited to participate in the writing of the
e-Patients white paper and to join the team of luminaries that Doc Tom
gathered for the task.  We are all sad that he isn’t here to enjoy this
discussion, but are thrilled that his work is continuing on.
  

    
In response to Gail's very interesting question, the reality about
privacy on the Internet is brutal. I know that most sites have very
complex documents explaining their sophisticated privacy policy. The
documents are usually complex enough to give you a feeling you are
protected just because it looks so complicated :-) 

The privacy policy statement of ACOR is different. It states "Writing
to the Mailing Lists: Please be careful not to disclose on the mailing
lists any personal or other information that you do not wish other
people to have access to or that you would later want to remove. Except
as set forth elsewhere in this Privacy Policy or in the Terms and
Conditions , ACOR cannot and will not remove content from any mailing
list or from the archives of the mailing lists. Accordingly, each
subscriber should weigh the potential benefits and risks participating
on the lists. The only sure way to protect one's privacy is to never
write to the lists. Moreover, although we strive to deter abuse of our
resources, it is possible that unknown persons or entities could access
and archive the lists without our permission."

This doesn't seem to have stopped many subscribers from actively
participating to one or more of the communities. People, particularly
those dealing with a rare disorder where VERY few true specialists
exist in the entire US, understand rapidly that the benefit of
communicating in-depth with other patients and caregivers outweigh the
risk of privacy breach. 

In reality I am not at all convinced that communicating through
well-designed systems like The Well or ACOR presents a higher risk to
your privacy than when you automatically give away all your private
data every time you go to a doctor's office, where in most cases there
is no established policy to deal with all the paperwork generated! 
  

    
I think that sites that support community tend to be more respectful
of privacy issues. On the other hand, sites that seek to monetize
community are less respectful, and more apt to want to take ownership
of member data. I've always supported the contention that individuals
should own and control their own data - I think Europeans are more in
line with that thinking.

If there's sensitivity about revealing identity in a forum on health
issues, you can always allow some degree of anonymity. It's best to
link forum use to a real world identity at some level for
accountability reasons, but this doesn't have to be exposed to
everyone, it can be confidential within the system.

Gated communities like the WELL have discussions that are what you
might call semiprivate. On the WELL, we don't have internal anonymity,
but there's an expectation (sometimes violated) that "what happens on
the WELL stays on the WELL."

I wanted to make another point about the various health forums.  It's 
hard to find authoritative medical information online that's direct
from professionals. When you search for information about a particular
conditions, quite a bit of the info that turns up is in informal
discussions in forums. Sometimes that info is useful, but there are
inherent questions of credibility and reliability when the info is
coming from indirect sources, informally.

I've assumed that we don't find more authoritative info online because
of liability issues. How might this change, and should it change? To
what extent should non-professionals have access to information that
supports self-care? Should we be concerned with inaccurate
self-diagnosis? And how involved can professionals be in online health
discussions without creating liability issues?
  

    
My apologies for coming late to the discussion. I'm Dan Hoch, a
neurologist at the Massachusetts General in Boston, and I guess I'm one
of the folks Tom and others in the group consider an "open minded"
provider (which I take as an incredible compliment). I stumbled into
this area out of pure laziness, actually. When I discovered that I can
barely remember my own name, let alone all the medical info that is
needed to be a good doc, I realized I had to get help from my patients.
I learned that many were willing to be much more interactive than
doctors think (or want, in some cases). 

Around the same time my eyes were open to a different relationship
between clinicians and patients, John Lester, the neurology "computer
guy", opened my eyes to the idea of communities of people working
together using telecommunication. We experimented with dial up bulletin
boards before there was a web, and when Mosaic burst upon the scene,
we quickly adopted the web for patients with neurologic disease and
founded Braintalk.org. Since then, I've used many different ways to
bring people together to improve thier healthcare. I've used face to
face group appointments, web bulletin boards, email, IM and most
recently, virtual worlds and found great possibilities in all of them. 

I'll try to interject a couple points to the conversation that is
already underway. First, I didn't see it referenced above, but I think
Gilles once articulated the potential pitfall of Web 2.0 applications
in healthcare with a phrase I really like. He pointed out to me that
many times in Web 2.0, "the technology becomes the star", but for
e-Health to really work, we have to remember that the people and
relationships are the stars. I think this is a very critical point, and
one that gets lost when we try to build business plans. 

I suspect that part of the problem is that technology can be owned,
and people and relationships, or "processes" are more difficult
control. But much more broadly, this idea comes down to something that
excited Tom F. very much shortly before he died. That is the concept of
the "democratization of innovation". He'd had a conversation with Eric
von Hippel who's written an excellent book by exactly that title.  
Tom and I talked about this a great deal, and in brief, we were excited
by von Hippel's observation that most, if not all, truly great
innovation comes from end-users of goods and services, not from the big
companies or people who provide them. 

I think what we are seeing in the e-Patient revolution in healthcare
is clearly this process at work. To the extent that individuals,
government and large and small business vest power in the end-users,
i.e. patients, care givers and clinicians, there will be innovation and
improved healthcare.  The Web 2.0 applications that enable this
process will be great; those that don't will stifle progress. 
  

    
We've hosted live expert chat with Dr. Greene (moderated protocol) and
open chat (both hosted and non-hosted) for many years. Although Chat
has been around for a long time, it's very Health 2.0!

We first started chatting on iVillage's ParentSoup.com from 1997 -
2000, then on adam.com in 1999 (Alan actually chatted live for 24 hours
to promote their community launch), then AmericanBaby.com from 2000 -
2001, and at DrGreene.com since 2001. We've used a few different
technology platforms over the years. While our readers enjoy a few
bells and whistles, the real thing they're looking for is a way to
connect with Dr. Greene and each other. They want the technology to
work and they want it to do what they want it do. For Chat that
includes easy login, easy to read chat screen, and effective private
messaging. After that, they want the technology to be invisible. It's a
tool. A means to an end. But the technology isn't what they're excited
about. 

In the next month or so we're launching a new suite of tools. They're
all 2.0 in nature. There are a few bells and whistles, but as we've
designed them, our goal for the tools has not been for the tools to be
the stars. They're just another (and hopefully better) way for people
to connect with us and each other, to share their ideas, and find other
people's ideas. 
  

    
The issue of privacy in health communities (and by extension, in the
Health 2.0 space) is one where many of us have been beating the drum
now for years, but I suspect people won't really understand it until
something bad happens to them because of it. In the many health
startups I've consulted for, search engine optimization has nearly
always taken precedence over privacy concerns of the individual who is
posting to the 2.0 site or community.

At Psych Central, we've split the difference. Our main community site
prohibits all search engine indexing, making it fairly "private"
without having to close it off in a walled-in garden. This allows
non-registered visitors to really get a flavor of the community and
what they could benefit if they become a member. On our neurological
support community, NeuroTalk.org, we've taken a more traditional
approach and allow the community to be fully indexed. So far, this
attempt at balancing the needs of individual members' privacy with
those who would like to be able to quickly search a community for its
information nuggets seems to be working well for us.

Also with privacy issues comes, hand-in-hand, issues of security.
Because a user's individual privacy is only as good and as secure as
the system they're using to communicate. All too often, security online
is an after-thought for many health companies, and few do little to
help better educate their members about actions they can take to make
their information more secure.
  

    
John Grohol's take on privacy is, as expected, a balanced one. At ACOR
we have also prohibited the indexing by search engines, due to the
nature of the conversations and of the diseases. Since cancer is a
genetic disease, for many people diagnosed there is an hereditary
component. We don't know yet how this information could be misused so
we prefer to block access as much as possible without choking the
system entirely. 

But we also have to remember that the instruction we give to search
engines is only a voluntary one. It is followed only by the search
engines that are compliant not by those designed specifically to
circumvent the limitations we put in place. Complete privacy on the
internet is basically a fallacy. The users should know that fact. 
  

    
e-Patients is specifically about empowering the patient and including
them as a partner in treatment. How is the web a factor here? To what
extent are physicians making themselves more accessible online? To what
extent is time a factor?
  

    
As a physician who makes himself available online, and has even
developed resources for patients to work with their medical team, it
seems clear that most docs don't make themselves available through
these channels. Time is only a part of the problem. More importantly,
given the pressure from our administrative overlords to "be
productive", we need to perform billable services. The slowness of
payors to reimburse for e-services is very important. I actually think
physicians will become a lot more engaged if they could be reimbursed
for email, e-vists and other internet based services. Imagine, if you
will, a lawyer spending a couple hours a day selflessly answering
questions on the web. I admit that there are a lot of differences
between practicing law and medicine, but some aspects of human nature
are pretty consistent. 

You also asked about the role of the web in promoting partnership. I
find that the power of the web to bring groups together WITH the
provider (nurse, doc, other) is often overlooked by clinicians and
e-patients alike. Clearly, groups of patients pull together to lend
support, answer questions and mentor one another. But, what I have
found with my own patients is they like including me in the online
group. After all, we all share a city/region and hospital.  It's like a
more informal, relaxed version of our waiting room and can save me and
others on our staff lots of time and energy. My patients provide an
ideal balance to my one-sided view of medical care. For 4 years I had
some funding to maintain a web resource for my patients. There were
plenty of times when I was pulled up short by the rest of the group (my
patients) when I was spouting something that was narrow minded. Not
only did they keep me focused on what it's like to have epilepsy, and
the issues they faced, they also kept me informed about the latest
medical breakthroughs that I had not had time to read about. Frankly,
we ALL learned a lot. 
  

    
I think reimbursement is a major issue, certainly. But I'm in the
middle of a long discussion with my own pcp, a former colleague, about
how much his efficiency could be improved by getting email from his
patients- or at least some subset of them- rather than garbled phone
messages, run through an administrative sausage grinder, that require
more of his time in the long run than a two line email or private post
would- not to mention my time. 

If we could free up the time he's spending on miscommunication, I
think we could improve his actual reimbursements by a healthy margin.
Practice-wide, and it's a large practice, I think the idea could have
real legs, in terms of freeing up physician/PA/NP time to perform
reimbursable services. 
  

    
Maybe it's just a question of finding the right business model? For
instance, a physican might add a charge for online repsonses, but
adjusted for efficiency. Or perhaps charge a flat rate for ongoing
online access, apart from office visits?
  

    

> I would love to learn more from *this* community about how you
> gather/trade health info and what advice you have for newcomers to
> online social space 

I think "Health 2.0" is a bit over-hyped. An easy to use online extention
of what we already have is useful.

As was mentioned, the Well is a semi-private place to talk about issues.
There are the places open to all such as <health.> and ones with a
restricted access list such as <diabetes.ind.> 

What I've found very useful and shared with others on the Well is in a few
areas - nothing terribly unique, of course,

- Researching drugs I've been prescribed. I've been prescribed drugs
  where the patient info sheet, the doctors and the pharmacist all missed
  something to watch that is on the drug company's web site. Sure this
  should not happen, but in the real world it does.

- Reporting back on symptoms. I've had a doctor who assumed that my
  symptoms were caused by a particular condition but then he realized
  that the most common explanation was not correct. 

- Providing and receiving emotional support. Especially when someone
  has something serious being there for him or her is very helpful.

In the interest of full disclosure, I'm an information glutton. I'll visit
reputable sites such as Mayo Clinic, search http://scholar.google.com,
search the NCBI database (http://www.pubmed.gov) as well as, with a large
amount of salt, look at sites outside the mainstream. Of course, there's a
risk of 'medical school syndrome' when I decide I have something I just
read about, but I've also found symptoms to think about and to mention to
the doctor.