May 30, 09:02:42 PDT> Alex: We have a series of special sessions scheduled today and tomorrow in this chat room

May 30, 09:02:44 PDT> Alex: featuring guest speakers who can talk about different aspects of the social web and its value for nonprofits

May 30, 09:03:01 PDT> Alex: Beginning with our guest speaker for this hour, Judith Feder of Brodeur

May 30, 09:03:05 PDT> Alex: Hi Judith!

May 30, 09:03:19 PDT> gabber596: Hi, Alex! Thanks so much for this opportunity.

May 30, 09:03:46 PDT> Alex: Thank you so much for taking part.

May 30, 09:04:11 PDT> Alex: We have you billed as talking about "Health care and web 2.0 patient communtieis"

May 30, 09:04:22 PDT> Alex: do you think you could begin by telling us a little about Brodeur

May 30, 09:04:35 PDT> Alex: and what you mean by "Web 2.0 patient communities"

May 30, 09:07:01 PDT> Judy Feder: Sure. Brodeur is my employer, we're a communications consultancy. They have been incredibly supportive of the work I'm trying to do with online patient communities, but that work actually stems from my own experience as a breast cancer patient,

May 30, 09:07:11 PDT> Judy Feder: and my active participation in a list.serv called BCMets.org

May 30, 09:07:23 PDT> tuesday: and bcmets. org is ?

May 30, 09:07:44 PDT> Judy Feder: It's a free list.serv for women (and men) and their caregivers with late-stage, or metastatic breast cancer. For many women, this has become a chronic illness, which means that we're dealing with it every day, and that we are avid seekers of support

May 30, 09:07:53 PDT> Judy Feder: communities, online and otherwise.

May 30, 09:08:01 PDT> enochchoi: What makes list.serv emails part of web 2.0? any social networking? tagging? chat? im? blogging/podcasting/videocasting?

May 30, 09:09:31 PDT> Judy Feder: No, enoch. That's just the point. Almost any online patient community I've found - no matter what the condition it deals with, is a very basic list.serv or bulletin board. I think there is enormous potential to add Web 2.0 capabilities to these

May 30, 09:09:32 PDT> Judy Feder: communities.

May 30, 09:10:18 PDT> Alex: I'm guessing part of the value of email lies in how many people can use it?

May 30, 09:11:19 PDT> tuesday: sorry im a little bit ignorant, what exactly is web 2.0?

May 30, 09:11:19 PDT> Emily: I have seen lots of wikis for health care related issues and I agree there is potential for web 2.0 in health communities

May 30, 09:11:19 PDT> Judy Feder: Right now, people on my list.serv have to undertake multiple "transactions," as I call them, if they want to do things like post pictures or video -- they basically have to go to other web sites, whether Flickr or others.

May 30, 09:11:23 PDT> Alex: Judith, do you think you could answer Tuesday's question re: web 2.0?

May 30, 09:11:26 PDT> Alex: I'd love to get different speakers' perspective on that one, over the next two days

May 30, 09:11:38 PDT> Judy Feder: Yes, the value of e-mail is its ubiquity, and I wouldn't want people to lose the ability to get this information via e-mail - but about half the people on the list.serv access postings via the Web anyway.

May 30, 09:12:19 PDT> Judy Feder: Ah...the $64,000 question of what is Web 2.0! Let me try

May 30, 09:12:24 PDT> Neville: Perhaps what we are doing right now is one example of web2.0 :)

May 30, 09:12:58 PDT> tuesday: i think this is important especially for those non-profits who are stil not tech-savvy

May 30, 09:13:43 PDT> Judy Feder: definitely. Web 2.0 is certain a set of technologies, but I'm not going to go into that here.

May 30, 09:14:04 PDT> Trey: Tuesday: the unabridged version of web 2.0 -> http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html

May 30, 09:14:10 PDT> Judy Feder: What's important is that those technologies are enabling people to use the Web to interact with each other in whole new ways.

May 30, 09:14:20 PDT> tuesday: thanks trey!

May 30, 09:14:25 PDT> Emily: can you explain which web 2.0 tools you think are important in health care?

May 30, 09:14:26 PDT> Judy Feder: Yup - the Tim O'Reilly article is great.

May 30, 09:14:52 PDT> Danielle: I have two main interests with this conversation: 1) How to make conversations like these as robust as possible (i.e., incorporating additional technologies for as immersive an experience as possible), and 2) capturing and maintaining the knowledge

May 30, 09:14:59 PDT> Judy Feder: Yes. I think the ability to create very robust personal profiles is important.

May 30, 09:15:31 PDT> Danielle: ....and 3) outputting that knowledge for other uses.

May 30, 09:15:49 PDT> Danielle: Whether spreading the word, getting funding support, etc.

May 30, 09:15:49 PDT> Judy Feder: This is not only to enable users to form stronger bonds (by seeing pictures of each other, etc.), but to capture detailed information about their disease profile that could be used in other ways.

May 30, 09:16:04 PDT> Alex: how has that worked --or not worked -- on BCmets?

May 30, 09:16:13 PDT> enochchoi: If half of the folks who are on your breast cancer list.serv read via your web interface, it may be easier to promote web 2.0 services to them, if you show them how those services enhance their interaction & intimacy.

May 30, 09:16:44 PDT> Judy Feder: Danielle -- I'm TOTALLY with you on this. In fact, I think the "collective wisdome" of patient communities has the potential to constitute a database that the healthcare community can benefit from.

May 30, 09:17:24 PDT> Judy Feder: Enoch, I actually surveyed my community, and they are VERY interested in Web 2.0 services, whether or not they access via Web or e-mail.

May 30, 09:17:53 PDT> Danielle: Here's a question for everyone - which technologies would you recommend to Judy for her health-focused list-serv?

May 30, 09:18:15 PDT> Dawn: Regarding the database idea, how to handle privacy? This seems like a tough nut to crack...

May 30, 09:18:20 PDT> Judy Feder: About 75% said they would create a detailed personal profile. And 93% were interested in sharing data with the largerabout their experience, assuming personal privacy could be protected.

May 30, 09:18:49 PDT> enochchoi: One issue you'll face when you consider aggregating users' participation for public "collective wisdom" -- many don't want their emails publicly released. What do they mean "the larger", how public is that?

May 30, 09:18:58 PDT> Judy Feder: Dawn, I agree it presents challenges, but I don't think they are insurmountable.

May 30, 09:21:02 PDT> Judy Feder: Enoch, that's why I was so surprised that over 90% of respondents WANTED to make their collective wisdom public. We need to figure a way to protect privacy. But I think that can be done depending on how the data is entered and archived.

May 30, 09:21:41 PDT> Danielle: Create a set of rules for people to follow for when they enter their data.

May 30, 09:21:50 PDT> Danielle: Separate personal data from stories and experiential data.

May 30, 09:21:55 PDT> Neville: Danielle: I would guess that having some way of rating messages by usefulness would help readers to get to the most useful messages first without having to sift through everything.

May 30, 09:22:13 PDT> Judy Feder: Essentially, I think people dealing with chronic illness -- not just cancer -- are highly motivated to have their experience serve some greater purpose. They want to help find a cure, or help improve quality of life/quality of care.

May 30, 09:22:55 PDT> Judy Feder: Yes, Neville, or at least a robust search engine that would help bring back relevant data.

May 30, 09:23:01 PDT> Tuesday Gutz: I agree with neville. Rating could lessen information overload

May 30, 09:24:02 PDT> Judy Feder: There was a question before about what technologies might be appropriate? I have a colleague working on a technical spec, but I would love any input on this.

May 30, 09:24:12 PDT> enochchoi: It think that's wonderful, you have a very open and generous user base. In my experience, it's been hard to have patients be wiling to be that open. You need to be explicit telling people that when they participate, their writing will be published

May 30, 09:24:19 PDT> Eric Leland: This collaborative environment would need some emphasis on what is useful, would be great to link similar stories, or those stories folks found to be useful and related to others they read (ie. people who read x also read y).

May 30, 09:24:58 PDT> Judy Feder: Enoch, that's interesting. I've talked to people in the MS and diabetes communities, and have found similar openness.

May 30, 09:25:44 PDT> enochchoi: I think it's just about setting expectations. When you let people know that their participation will be published, you get different interactiopn

May 30, 09:25:50 PDT> Dawn: I wonder if there may be a difference in participation depending on the "sponsor"

May 30, 09:25:54 PDT> Judy Feder: Eric, great point. Right now the list.serv search is so feeble that people end up "re-writing" their stories every time a new member joins that has a question for which they might have relevant experience.

May 30, 09:26:20 PDT> Dawn: An online community of patients vs. something sponsored by payers/

May 30, 09:26:25 PDT> enochchoi: it's less intimate if they don't feel like they have as direct a line of communication with their reader.

May 30, 09:27:17 PDT> Judy Feder: Yes, Dawn, the sponsorship thing is very interesting. Obviously, having the pharma companies involved would be very tricky. One thing I've thought about is an e-commerce component.

May 30, 09:28:46 PDT> Judy Feder: People talk a lot on the list. serv about products and services they've found that are helpful in disease/symptom management. For many, being able to buy these things online would be a great convenience -- a blessing for those who have limited

May 30, 09:28:46 PDT> Judy Feder: mobility

May 30, 09:29:31 PDT> Danielle: What about starting by connecting with pharma company samples programs, i.e., I used to work for Hoechst-Roussel Pharmaceuticals (now Aventis). People would call in to have their scrips filled for free by our company.

May 30, 09:29:45 PDT> Judy Feder: I realize, again, that that stretches the boundaries of a

May 30, 09:29:57 PDT> Eric Leland: Its interesting how to build a climate of sharing in these communities where intimate information is shared. I could imagine a pairing of the online discussion that is juiced from off-line discussions, where folks can build some trust f2f.

May 30, 09:29:57 PDT> enochchoi: Can't you facilitate e-commerce already via your emails? just shorten urls with tinyurl.com

May 30, 09:30:17 PDT> Judy Feder: not-for-profit, but I think that's what Web 2.0 is about.

May 30, 09:30:25 PDT> Danielle: There are a number of companies out there who provide patients with free meds.

May 30, 09:30:46 PDT> Danielle: ...or at reduced rates.

May 30, 09:30:48 PDT> Judy Feder: Danielle, do you mean pharma companies, or others?

May 30, 09:32:30 PDT> enochchoi: AHA! when you're talking about getting prescription meds, you'll have to involve your doctor. Hope you don't mind me pumping my chat tomorrow at noon: we'll talk about that.

May 30, 09:32:34 PDT> Judy Feder: Enoch, I'm sure we can facilitate e-commerce, but I think the idea is more to enter into an arrangement with an online retailer(s) who might support the initial creation of the infrastructure, and then contribute a portion of revenues generated from

May 30, 09:32:44 PDT> Judy Feder: the community back to the community

May 30, 09:32:46 PDT> enochchoi: Personal health records, patient-MD communications, etc

May 30, 09:33:14 PDT> Peter: Are there Web 2.0 examples for chronic disease?

May 30, 09:33:38 PDT> Judy Feder: Enoch, I'm very interested in that, too. People have asked if it could all be combined (patient communities, health records). I think that's a pretty tall order.

May 30, 09:34:01 PDT> Judy Feder: Peter, I haven't found any. That's why I'm so eager to see if we can use BCMets as a test case.

May 30, 09:34:21 PDT> Danielle: Judy, can you tell us more about your experience with your list-serv and it's audience?

May 30, 09:34:35 PDT> Danielle: * its

May 30, 09:34:44 PDT> Judy Feder: Sure, what would you like to know?

May 30, 09:34:52 PDT> Dawn: It is a tall order. Web 2.0 for patients would really be amazing if their doctors were on board with all of this. Many are hostile to just email.

May 30, 09:35:22 PDT> Dimitri Glazkov: She's talking about microformats

May 30, 09:35:32 PDT> Dimitri Glazkov: may not know it, but that's Angela is talking about

May 30, 09:35:45 PDT> enochchoi: At Palo Alto Medical Foundation, we have 57,000 patients using our personal health record, PAMFonline. It's the largest user base of patients using web2.0 health appications in the world

May 30, 09:35:56 PDT> Judy Feder: I'm an active member. There are about 800 registered users. About 300 active users, of which the vast majority are very active -- read posts every day, post at least once per week.

May 30, 09:36:04 PDT> enochchoi: i'll talk about that tommorow...

May 30, 09:37:12 PDT> Judy Feder: I don't think doctors have to be "bought in" to have Web 2.0 patient communities, although it would be great. Docs could be guest speakers on webinars, have their own blogs.

May 30, 09:37:29 PDT> MSifry: ?

May 30, 09:37:47 PDT> Judy Feder: But if one of the cornerstones of Web 2.0 is "harnessing the collective wisdom" of users, I think docs should be interested in what patients are saying on these communities.

May 30, 09:37:57 PDT> enochchoi: What's even more powerful is to have the physicians intimately involved as part of the experience. We do that here at PAMF

May 30, 09:38:09 PDT> enochchoi: Yes, i'm an online doc ;)

May 30, 09:38:25 PDT> Judy Feder: There's a WEALTH of info about side effects, treatment protocols, doc/patient communications...you name it.

May 30, 09:38:26 PDT> enochchoi: i play one on the web, and in meatspace.

May 30, 09:39:48 PDT> enochchoi: We have 300+ MDs at PAMF who are just like me.

May 30, 09:40:56 PDT> Dawn: Online docs are precious! I deal with many docs who question the information patients bring in to them on their PHRs

May 30, 09:41:06 PDT> enochchoi: But I think our role is limited to the care experience. Online community will mostly be populated with patients

May 30, 09:41:13 PDT> enochchoi: We're too busy just seeing patients.

May 30, 09:41:21 PDT> enochchoi: Segue: i have to go back to my patients...

May 30, 09:41:21 PDT> enochchoi: see you tomorrow at noon!

May 30, 09:41:24 PDT> Tuesday Gutz: But you think this would open up a new opportunity/job description of doctors who just specifically cater to online patients?

May 30, 09:41:24 PDT> Peter: on webinars: We've enjoyed success with vblogging a geriatric services conference. Although it remained behind "closed doors" for professionals ...

May 30, 09:41:51 PDT> Peter: ... much to our disappointment. But the information providers had concerns about their material being misappropriated. But they we're willing to take a small step.

May 30, 09:42:27 PDT> Judy Feder: yes, I think everyone has to get more flexible about sharing information....

May 30, 09:43:01 PDT> Marshall: Is it crazy to ask whether Creative Commons would be useful in such a situation?

May 30, 09:43:15 PDT> Judy Feder: could you tell me more about that?

May 30, 09:43:37 PDT> Marshall: There are a variety of CC liscences

May 30, 09:43:37 PDT> Marshall: that can be ported to multiple jurisdictions

May 30, 09:43:37 PDT> Judy Feder: i'll check it out.

May 30, 09:43:47 PDT> Peter: <Creative Commons> - suited to US audience/content.

May 30, 09:43:55 PDT> Nedra: How much of a concern is misinformation being spread in online patient communities? Is it generally self-correcting, or do you recommend having a physician or other knowledgeable moderator involved?

May 30, 09:44:42 PDT> Marshall: (http://netsquared.org/linksvayer that's an interview with Creative Commons CTO)

May 30, 09:44:49 PDT> Judy Feder: There was a paper published recently that shows these communities are VERY efficient at self correcting. It was cited in a British Medical Journal editorial.

May 30, 09:45:14 PDT> Nedra: Interesting. Does there need to be a critical mass of participants for that to happen?

May 30, 09:46:18 PDT> Judy Feder: The article isby A Esquivel, and is titled "Accuracy and self correction of information received from an internet breast cancer list."

May 30, 09:47:31 PDT> Judy Feder: The article examined 4600 postings in Q1 2005. I don't know if that's critical mass. Only 10 postings were considered false or misleading, and 7 of those were flagged by other members and corrected in 5 hours or less

May 30, 09:49:06 PDT> Nedra: Thanks for the reference. Sounds like a pretty big community. I'm sorry I came in late and you probably already covered this, but could you talk about what you are doing with your online community that is more than just e-mail/bulletin board

May 30, 09:49:15 PDT> Nedra: postings and more like web 2.0?

May 30, 09:50:18 PDT> Judy Feder: right now, we're not doing anything more. But I surveyed the community, and found them very open to things like creating rich personal profiles with text, photos, video, etc. Also pretty strong interest in blogging on the site.

May 30, 09:51:08 PDT> Nedra: I would think that patients blogging about their experience with a disease for others with that disease would be pretty powerful -- for all involved!

May 30, 09:51:17 PDT> Marshall: Share Your Story from March of Dimes seems like it would be worth a look

May 30, 09:51:17 PDT> Judy Feder: And my real "Web 2.0 wish" is that the collective experience posted on such sites could somehow be databased and shared with the greater healthcare community -- and members of my list.serv are VERY open to that, assuming their personal privacy was

May 30, 09:51:25 PDT> Judy Feder: not compromised.

May 30, 09:51:44 PDT> Alex: I'm also really interested in the potential for practical tools that can help people manage their health needs

May 30, 09:51:53 PDT> Alex: eg scheduling, setting up care networks

May 30, 09:52:50 PDT> Judy Feder: Yes, those do exist. One is called Lotsa Helping Hands

May 30, 09:53:12 PDT> Judy Feder: www.lotsahelpinghands.com

May 30, 09:53:17 PDT> marnie: Lotsa Helping Hands is an interesting site and tool.

May 30, 09:53:35 PDT> marnie: It helps with the scheduling -- and gives people a structure that helps them to think of what's needed --

May 30, 09:53:42 PDT> marnie: but the community aspects are weak.

May 30, 09:53:55 PDT> marnie: Difficult for folks to work together outside of the templates that are provided.

May 30, 09:54:36 PDT> Judy Feder: I think we have just a few more minutes in this session. I would love to find a way to keep this discussion going. I'll certainly post to my Net2 blog.

May 30, 09:55:11 PDT> Judy Feder: Marnie - to your point. No one site I've seen brings it all together. I don't know if one can. But I think the community aspect is key for patient communities.

May 30, 09:55:24 PDT> marnie: We can certainly take a next action of putting a space on Net2Learn to join people in this conversation.

May 30, 09:55:36 PDT> Eric Leland: Seems like a strategy that opens up the blog option for registered users, then is seeded initially with some patients who have strong stories to tell would spark the community forward. Also this site should start to aggregate other blogs/feeds

May 30, 09:55:38 PDT> Judy Feder: that would be great.

May 30, 09:55:40 PDT> Eric Leland: out there..

May 30, 09:56:08 PDT> Judy Feder: yes, good point, eric.

May 30, 09:56:21 PDT> Nedra: What do you think is the key to building a successful online community?

May 30, 09:56:42 PDT> Judy Feder: Again, people share URLs all the time on the list.serv, but it doesn't have the interactive, aggregative capabilities of Web 2.0.

May 30, 09:57:31 PDT> Judy Feder: I think the key is a community of shared interest. I happen to be interested in people managing chronic illness, but this could be about pets, or opera lovers...

May 30, 09:57:36 PDT> Eric Leland: I think a strong intersection between the f2f and online collaboration is key to strengthening contributions online. Building trust, and utility of the information.

May 30, 09:57:56 PDT> Judy Feder: BCMets IS successful as far as it goes, but it could be so much more powerful.

May 30, 09:58:49 PDT> Cyber-Yenta: Eric: That's the thing that really was the breakthrough about the Howard Dean campaign. People started crossing over from political arguments online to DFA meet ups!

May 30, 09:59:28 PDT> Cyber-Yenta: Making the jump from cyberspace to f2f is even more interesting than the breakthroughs in online fundraising, et cetera.

May 30, 09:59:46 PDT> Eric Leland: I think folks find more synergy with online culture if they have some ground level tie to the same people or info

May 30, 10:00:34 PDT> Cyber-Yenta: Eric: Agreed! I find it much easier to build a working relationship online AFTER I've met someone f2f

May 30, 10:00:37 PDT> Judy Feder: I agree. Many people on my list.serv have developed f2f relationships, but it's also great to have a relationship with someone on the other side of the country, or even the ocean, with whom you have a shared experience.

May 30, 10:01:00 PDT> marnie: Shaking hands helps to cement relationships.

May 30, 10:01:17 PDT> marnie: It makes it a lot easier to follow up (and to not just hit the delete key) if you've actually seen someone's face.

May 30, 10:01:19 PDT> Cyber-Yenta: Or hugging. Depending on the local custom. :-)

May 30, 10:01:24 PDT> Eric Leland: I can see integrating the online at the f2f events, a workshop should exhibit the conversation that exists online, and invite further conversation. Just to make the link strong.

May 30, 10:01:30 PDT> gabber995: hi there everyone

May 30, 10:01:37 PDT> GregoryHeller: that was gregoryy heller

May 30, 10:01:39 PDT> Marshall: I can't remember who I was talking to some time ago about a cultural context where meeting someone online first then f2f was thought of as totally nuts, and online relationships only flourished when there was a preexisting f2f relationship

May 30, 10:01:42 PDT> marnie: The link, I think, is about accountability.

May 30, 10:01:49 PDT> Sarah Pullman: (testing)

May 30, 10:01:49 PDT> marnie: Online or offline.

May 30, 10:01:49 PDT> GregoryHeller: whish that i could be with you

May 30, 10:02:04 PDT> Cyber-Yenta: Gregory: Wish you were here, too!

May 30, 10:02:11 PDT> Alex: hi folks

May 30, 10:02:14 PDT> Marshall: Greogry- you are, in the Gabbly Chat at least!

May 30, 10:02:15 PDT> Alex: we now have our 10 am guest online

May 30, 10:02:20 PDT> Cyber-Yenta: Trust, and accountability.

May 30, 10:02:30 PDT> GregoryHeller: I have been so busy with http://www.defectivebydesign.org the campaign against DRM that i couldn't take the time away

May 30, 10:02:32 PDT> Alex: so I want to thank Judith for kicking off our remote conference with such a terrific conversation

May 30, 10:02:32 PDT> gabber764: space cadet to mothership... come in. over.

May 30, 10:02:35 PDT> Judy Feder: I think another session is about to start. I'm going to sign off, but this was great. Anyone who wants to contact me can find my info on my profile: jfeder56

May 30, 10:02:45 PDT> Alex: I'm really thrilled that we were able to have such a productive conversation

May 30, 10:02:47 PDT> Nedra: Thanks, Judy!

May 30, 10:02:54 PDT> Alex: the chat transcript will be posted on NetSquared in a little while

May 30, 10:02:57 PDT> enochchoi: thanks judy!

May 30, 10:03:02 PDT> Judy Feder: Thanks to all of you!

May 30, 10:03:13 PDT> Alex: before we start on our next sessoin, I'm taking 30 secs to update the schedule on this page

May 30, 10:03:19 PDT> Alex: so apologies if that nukes anyone's connection

May 30, 10:03:28 PDT> Tuesday Gutz: thanks judy!

May 30, 10:03:28 PDT> Alex: the page will be back right away

May 30, 10:03:31 PDT> GregoryHeller: You should all go and check out our site, and sign up... we are using bleading edge civic engagement technologies, drupal, civicrm and civimail, combined with web2.ohhhhh stuff like flickr and you tube, we are also doing flash mobs and may do sms! ;

May 30, 10:03:32 PDT> GregoryHeller: )

May 30, 10:03:48 PDT> Tuesday Gutz: what is the website address

May 30, 10:03:56 PDT> GregoryHeller: http://www.defectivebydesign.org

May 30, 10:04:05 PDT> GregoryHeller: over 1200 people signed up so far

May 30, 10:04:05 PDT> Cyber-Yenta: Is there a way to click on the nicknames of folks on this chat and find out their full names?

May 30, 10:04:06 PDT> Tuesday Gutz: thanks gregory

May 30, 10:04:12 PDT> GregoryHeller: thank you all