Consumer Empowerment, Semantic apps and consumerism at #med2

Real-time on the fly blog notes from Medicine 2.0 (#Med2)

I am looking forward to the Consumerism and empowerment session here at Medicine 2.0. Given that many of the challenges to modernizing healthcare are cultural rather than technical Social Networks have a great role to play in bringing people together.

Paula Hucko of HSAGlobal leads off. In Canada HSAGlobal works through Telus Healthcare solutions.

Trends:

• Rising Health Cost Burden is unsustainable
• Changing perspectives - move to wellness
• Enabling Technologies

Jen McCabe highlighted the "Silver Tsunami" where the age profile of the population is fueling the crisis on the demand and supply side of healthcare.

Mobile Telephony/data is driving change.

Text messaging is being used as a clinical intervention.

Smoking. Weightloss, exercise.

Needs to be two-way one-way doesn't work. SaaS model - reduces barriers to adoption.

STOMP - Smoking Cessation is live in New Zealand. Proving to be effective. 4,000 users. Works for younger target audiences.

TELUS in Canada use for employees. Smoking Cessation for employees. 17% quit rate after 12 weeks. Versus 4% for other programs.

MEDgle - Semantic Health Applications

MEDgle Semantic Health Catalyst API.

JJim Yong Kim - Not about finding new treatments the rocket science is in health and health care and HOW we DELIVER it.

Clinical Decision Support is seen as the key. The medical brain.

CDS1.0 - challenges include personalization and volume of information and multiple unsynchronized systems.

CDS2.0 - The semantics of health/ the semantics of us

MEDgle Catalyst is their semantic API.

Enables people to build applications and connect with other data streams.

Help people understand their options. Without understanding their can be no rational decisions.

Understand the consequences.

CDS2.0 is to help patients, providers, nurses.

eg.

• Differential diagnoses
• Diagnostic suggestions
• treatment options
• personalized analytics
• integrates with CPT/ICD9/10

Google, Amazon, Ebay, Twitter, Facebook have transformed the web though APIs. We need APIs for Health.

HealthyByte uses MEDgle API to filter health related stories.

Personalized Medicine is based on who we are. Genomics comes in to play.

Trevor Van Mierlo, CEO Evolution Health

Good intentions and bad investments: eHealth and the reality of market forces.

There is a law of attrition. Sustainability requires results.

Healthcare is:

• Personal
• Complex
• Revenue-based

Bottom line - You can't just build and deploy. You have to continually refine and change to keep levels of continued adoption high.

Mark Fam - Deloitte - Canadian Health Consumer Survey

2009 Survey findings.

16% of canadians participate in Health and Wellness programs. 56% willing to do so at no cost.

47% diagnosed with one or more chronic disease. 71% say they comply with treatment regimen.

29% consumers interested in Personal health coach and 24% a care coordinator.

20% seek information on quality and service scope. Canadians largely trust their medical providers.

54% concerned with information privacy.

61% are interested in a PHR provided by their doc, hospital or government. 40% v interested.

42% believe quality varies across the health system.

8:1 consumers believe quality varies widely across physicians.

Over 46% would use walk-in clinic vs waiting for a doc appointment

47% take prescriptin meds. 29% don't understand risks of those meds.

68% fill prescriptions. 80% take their meds. 1 in 4 forget to take meds.

Quality, faster access, improved convenience are drivers.

25% use alternative health services.

28% assist a family member or friend. 44% feel it beneficial to have access to PHR for person they assist.

43% of CA give health system a grade A or B. 3% give system an A.

CA people believe 32% of health spending is wasted.

CA People support expanding community care programs. Third most supported health reform.

Q and A session

Any research on incentives?

Personal note: It goes to the fact that we are inherently lazy. We need to provide easy, no brainer interfaces and data feeds so the PHR does the hard work of bringing in data. Vast majority of people will not adopt PHR's if they have to manually input most of the information. At very least PHRs should allow fax input and possibly OCR of captured images to help populate PHR.

Don't give up on the Personal Health Record

In just a few days HealthCampBoston takes place (Tuesday April 21, 2009). This is happening in conjunction with SocialPharmer at the New England Research and Development campus of Microsoft. This is set to be a massive event and a great pre-cursor to Health 2.0 Meets Ix on April 22-23.

Over one hundred people have signed up for the HealthCampBoston-SocialPharmer event.

In the prelude to this e-Patient Dave's experience in importing his medical claims records to Google Health got picked up by the Boston Globe. This has sparked a fascinating debate. You need to read Dave's post.

At the recent Web 2.0 Expo I had time to sit with Jay Parkinson MD and he also ended up commenting on e-Patient Dave's experience. Jay penned a powerful analysis in the Business Insider of what Dave had written about. John Grohol at e-patients.net described Jay's assessment as "Hitting one out of the park". However, I don't share Jay's conclusion.

Google Health and Microsoft HealthVault are still in the early stages of their evolution. I don't think it is time to give up on the idea. Indeed I think it just serves to confirm that we have to put the patient at the centre of the system and not bet on the Health Care Industry successfully building Electronic Medical Records and Health Information Exchanges in order to efficiently move garbage data about as around the industry outside of our purview.

If we can't trust claims information let's at least focus in on the information we can believe.

How about the medications we are taking, which could be pulled from our prescription records. This is an area where accurate data might actually save our life by avoiding damaging drug interactions.

The moves that the Continua Alliance is taking and Microsoft's device standards for HealthVault are a push in the right direction. I believe consumer accessible telemedicine devices are the next consumer wave. The data these devices collect belongs in our Personal Health Records where we can choose who we want to share that information with.

So Google, Microsoft and Dossia - Don't get dispirited. There will be bumps in the road. Let's tackle the simple stuff first and get value from collecting and sharing basic vital sign, prescription information and family history data that could prove of value to the medical community.

Keeping an open data approach to PHR's will provide the basic for a flourishing ecosystem that will be able to increasingly make sense of the complex data that will eventually feed from EMRs inside the health care industry.

If anything e-Patient Dave and Jay Parkinson's commentary just serves to underline the enormous benefits that are there to be grasped if we put the PHR and the consumer - us - at the center of the Health Care puzzle. The consumer/patient is the one common denominator. Patient Self-Management is not knew and it yields real, positive results. It is just that up to now we, the patients, have been working in the dark with snippets of information of uncertain value.

Rising medical costs are going to drive active consumer engagement and this is going to lead to more patient self-management not less. To my mind this means that the EMRs and Health Information Exchanges that are being planned in order to grab a piece of stimulus cash will be handling an ever smaller part of the patient management puzzle. Outside of chronic disease management, an increasing proportion of health management information is going to be managed outside of these EMR platforms. If the industry doesn't recognize the potential value of the un-tethered PHR then they will be faced with the prospect of operating with less and less of a full picture about the patient. That potentially leads us down a path of practicing more, not less, defensive medicine which will continue to drive medical spending higher.

The patient is at the center of this puzzle.

We are the common denominator.

To the Health Care Industry - Get over it! Give us, the consumers/patients, the tools to help us help ourselves. After all we are the ones that spend 100% of the time living with our diseases and ailments.

Join the discussion in Boston

If you are in the Boston area on Tuesday and are interested in this topic - come along to HealthCampBoston. you can grab a ticket by clicking the link below.

If you can't make it then check out this blog. We will be running CoverItLive to track the action from the day's events. If you are on Twitter, or other social networking sites then follow the #HCBos tag to keep tuned in.

Web2Open and HealthCamp

The Web2Open area is already shaping up to be the "Conversation Mashup" place to be. The buzz is building.

@JayParkinson is a great example of creating solutions using the simplest of tools like Google Calendar and a web site. Grew 300 patient practice in 3 months.

HelloHealth a little bit of Facebook, A little bit of Electronic Medical Record, A little bit of zipcar.

A simple tool for connecting with your doctor. Email, IM, Video chat, text messaging. Phone integration too.

eg. Track blood sugar via phone status messages to the doctor.

HelloHealth takes 7% of transactions.

"Low overhead to connect doctor with patients. Like zipcar - rent your doc's time."

In MA universal healthcare means the demand side is fixed. The result is a 52 day wait for a Doctor visit.

HelloHealth is trying to address the supply side.

"Enhancing Communication lowers risks against having a disconnected Doctor."

Is this any different to when the phone was introduced.

Question from the audience: One third of 18-35 year olds have a chronic illness.

Oldest patient is 88 and the youngest is 2. Average age of patients is 35. They do not deal with Medicare. 35% of people over 70 are online daily. 90% of doctors use computers.

HelloHealth will be launched in 2009. The platform will include ratings. It doesn't provide delegation of records - that is coming with the next iteration.

HIPAA is not an issue because the Patient is in control of the record but HelloHealth is a HIPAA compliant platform.

Patients can print their last few visits. A secure PDF can be created.

"Why waste resources integrating with 1980's HealthCare technologies"

An API will become available. Google Health integration

DayDum - super simple way to track everything about your life. Fascinating possibilities to track information about ourselves.

There is a $250B out of pocket health care market. That is the market HelloHealth is going after.

HelloHealth is self-selecting. Passionate doctors are coming because they want to provide better care to their patients.

"Doctors patients come from walk-ins and word of mouth."

Advertising - tried it in New York, Timeout etc. but had very low conversion rates. The best way to recruit patients is to put your name out there and let people talk about you.

HelloHealth provides Doctor profiles - like Facebook that introduce the doctor, their philosophy etc.

"HelloHealth is an EMR with a Social Network."

Existing PHRs are horrible and doesn't give you the data you want. HelloHealth is designed to look like a personal Health Blog. Labels, tagging etc. are provided.

"There is no front desk because you have direct access to your doctor."

"50% of HelloHealth office visits are on-line." The typical patient visits 2.5-4 times per year.

People respect the access when you give access to a Doc's mobile phone. More respect than if calling a 1-800 number.

System allows sharing for second opinions. The patient is alerted when this happens - because the patient is in control they then approve access to their record to enable the second opinion.

HelloHealth Integration

Medgle is integrated with HelloHealth it is a platform that provides information datapoints around a diagnosis. eg. Asthma. This guides the doctor and patient on what datapoints to capture around a particular condition.

Change:HealthCare tracks spending and can associate cost.

Using Twitter feeds to track real-time information.

SocialWeb at Web 2.0 Expo

What has been happening with Data Portability on the Social Web. ie. OpenID, OAuth, etc.

The workshop is being run by @chrismessina, @daveman692 and @jsmarr

I will twitter comments from this session using the tag #w2e_sw

If you want to build new and innovative services you don't want to frustrate your users by asking for a bunch of account related data. If the data is out there go and get it. Don't Re-Key!

You need standards to enable mashups. Alternatively, you need consistent formats.

If standards exist - use them!

http://www.oxyweb.co.uk/blog produced a world map of popular social networks. This struck me as a great parallel to the HealthCare world with incompatible/competing health care players.

Functional sites, like Friendfeed, Twitter, last.fm and Dopplr represent specialist services. They have the opportunity to create combined value but they need a social graph to create this.

Facebook solved this for many, as long as developers were prepared to live inside facebook.

Activity streams are an emerging standard. No logo yet.

XMPP is not that popular yet, although it is one of the pipes that Twitter implemented and search.twitter.com leveraged.

Partuza is an Open Social - social Network site that uses Apache Shindig.

Pinax is a platform for rapidly developing websites using social tools such as IM, chat,

The emerging theme is "Connect"

Facebook Connect, OpenSocial Connect.

New building blocks:

• Who you are
• Who you know
• What's going on

These are aspects of the social ecosystem. These create the virtual circle of sharing/knowing.

The anatomy of "Connect":

• Profile (id, accounts profiles)
• Relationships (friends, followers)
• Content
• Activity
• Goal (search and discovery)

Most sites are building on the Open Stack:

• MySpace
• Yahoo
• Google
• Plaxo
• Microsoft

Supporting:

• OpenID
• XRDS-Simple
• OAuth
• PortableContacts
• OpenSocial

Facebook is different but is matching these standards.

Why do this?:

- Why do people have to:

• Create a new account on every service
• Re-create their profile
• Give away their password to every site that asks
• Re-discover their friends
• re-friend their friends
• Learn new ways to share and communicate

Why do developers have to?:

• Deal with forgotten passwords
• create another profile form
• Support every new service API that emerges
• Force members to invite everyone they know
• Implement and unsafe method to import contacts
• Create widgets for incompatible social networks
• Manually interpret feeds for activity streams

Industry trends:

• User control of data
• User centric web services
• Locatin based services
• Real time content delivery ubiquitous connectivity
• Interoperable app platforms
• content aggregation and syndication
• increasing quantities of data to work with
• democratization of digital media creation tools

How do customers benefit:

MySpace has built login with OpenID and OAuth to compete with Facebook Connect.

OpenID popup extension is being developed to simplify the user interface, ala facebook connect.

The emerging issue is that once an item has been made "public" on a social network it can't be withdrawn. If you withdraw an item it may still exist in other places that were connected to the original publishing location.

Demos:

• Eventbox

Now for the technical stuff:

OpenID Demo:

Mapquest (owned by AOL). You can sign in to mapquest with OpenID.

In 2009 there are over 30,000 sites that let you login with OpenID (Relying sites). Growth from 20,000 in August 2008 and 10,000 in Jan 2008. (source: http://blog.janrain.com)

Implementing OpenID as a relying party (ie. accept OpenID)

Internally you need to map one or more openIDs to an internal account.

The OpenID User experience

Directed Identity is emerging as one solution to avoid need for users to know URLs.

At least there aren't too many major providers so the button option is still feasible.

Once people have become known to a site it is possible to tailor re-sign in based upon where a user has come from. eg. If they arrive from Gmail then assume a gmail account.

Personal Discovery standard is emerging, driven by EU demands.

The browser knows who you are so this may be a way to simplify login. This moves away from web sites trying to guess which accounts you use.

The Popup extension is emerging as a technique. The challenge is to avoid spoofing. People don't look at the URL bar.

Remember - you can use email address as an indicator of which OpenId providers to support.

Different sites have different account preferences. This leads to sites supporting multiple standards. eg. OpenID + facebook. At least supporting OpenId means you automatically support Yahoo, AOL, Google, MySpace and other popular sites.

Microformats are also important.

Microformats enable webpages to be an API.

Semantic information can be embedded in a page. Some of the oldest standards are hCard (vCard in HTML)

Use CSS classes to markup and style the data. Very simple way to markup information in existing web pages.

This is ideal for database driven sites because you can edit one output web page and apply a microformat to every database record that is displayed through that web page.

Twitter supports hCard and includes the rel=me setting. If you want your blog to be the top search result on your name in Google then add this value to your blog. Simply add rel="me" to a relevant link on your blog.

Discovery

The more you publish the more you need a way to identify what you are publishing as yours. Our desktop is moving out in to the cloud.

Identity enables discovery. XRDS-Simple "the name is more complex than the concept"

XRDS - defines services.

eg. OpenID, PortableContacts

eg. OpenID points to one service. PortableContacts points to Plaxo.

WordPress OpenID plugin supports creating XRDS file.

XRDS-Simple can be used for a personal discovery or for sites to publish their service endpoints

LRDD - Link-based Resource Descriptor Discovery (emerging work)

Authorization

Authorization is important so you don't have to make data public to make it portable.

Will OAuth work in a mobile mode? Yes!

iPhone example is FlightTrack Pro works with Tripit. The iPhone app uses OAuth and Safari to authorize the app on Tripit.com.

OAuth is a protocol for developing password-less APIs.

Plaxo was recently bought by Comcast. Comcast saw a 92% success rate with login using OpenID in collaboration with Google.

The Plaxo-Google connection uses a hybrid. They do the OpenID dance and also handle the OAuth token acquisition at the same time. They also collect and notify user on the basic information that will be used. eg. name and email address.

The Comcast-Google test worked so well that the business folks at Comcast wouldn't let them turn the experiment off!

OAuth can be used asynchronously to allow one user to give permission to someone else to gain access to their information. eg. Dave allows Chris to see his phone number in his contact record.

Relationships and Contacts

Rather than have to support writing to address book APIs for each major service they instead implement a standard protocol. That is PortableContacts. This builds on OAuth and vCard standards.

GMail now supports Portable Contacts. ie. No Google specific code is required to use information from the Google Addressbook.

OpenSocial REST People Protocol is now PortableContact compatible.

vCardDav compatibility is coming with IETF.

Linking Accounts

The XFN Microformat is being used to link accounts and services.

Add a Rel=Me link to connect pages on services..

You can also use Rel=Contact to identify friends.

Google's Social Graph API does this in a simple form. A demo is available.

Activity Streams

Activity Streams are in the realm of "LifeStreaming"

Friendfeed support approximately 59 services. Each was hand coded by Friendfeed.

Activity Streams is about creating a protocol that can be leveraged across sites.

Social Discovery. eg. Plaxo Pulse, LinkedIn network updates, Facebook status updates.

Messaging: Twitter, Yammer, Eventbox (desktop app)

Brand/Personal Monitoring: GetSatisfaction's Overheard searching Twitter.

Primitives: Active, Verb, Object

Actor, Verb Object (context)

Build on Standards

Use ATOM for lists. (aka feeds)

Activity Stream is using a derivation of ATOM to share streams.

Activity Streams is targeted to go in to OpenSocial.

Check out http://activitystrea.ms for the latest info.

Gadgets and OpenSocial

Allow applications to be added tomultiple sites. Write a gadget once and allow in to run on multiple sites. Over 700M users acorss multiple sites support OpenSocial from Myspace to Plaxo to Ning oor Orkut etc.

Shindig is an Apache incubator project for gadgets in OpenSocial.

You can also build OpenSocial apps in the Google AppEngine.

This standard simplifies Engineering integratin and allows developers to focus on PRODUCT integration - ie. How to fit in to the target environment. eg. Ning is different from MySpace.

Next Steps - Homework:

1. Markup existing Data

2. Stop leaking passwords

3. Support OpenID and OAuth

These tools are mature enough to enable simple integration across sites and business partners.

Check out theSocialWeb.tv for the latest news in the space.

HealthCampPhiladelphia (#HCPHL) is live

This morning the volunteers are amassing and participants are starting to arrive. Follow the action here, via CoverItLive or on search.twitter.com using the hashtag #HCPHL

This is the HealthCampPhiladelphia CoverItLive RSS Feed:http://rss.coveritlive.com/rss.php?altcast_code=8d547fcfae

HealthCampPhila is nearly here!

There is just over a week until HealthCampPhila kicks off on Saturday 28th March at Jefferson University. There may be a few tickets and sponsor slots left - check on eventbrite for the latest status (http://healthcampphila.eventbrite.com).

The event is primed to generate some fascinating discussion. If you are planning on attending the event then do come up and say hi!

On a separate note I wanted to follow up on my last post where I addressed the issue "Will Google and Microsoft resell my health data?" This question caused some re-tweeting and commenting on Twitter.

I want to thank David Harlow (@Healthblawg) for creating a "connect the dots" moment for me. His comment about health data being valuable took me back to posts I wrote over a year ago for AOL when I was considering OpenID, AIM, identity and portable reputation. The investment that we have made in instant messenger screen names that we have held for years represents a powerful element in building identity. However, that identity is virtual. The PHR is different.

The Ahah! moment for me was the realization that as Microsoft and Google enable us to store our health data they are in fact creating an incredibly valuable tool for trusted and credentialed identity.

Think about this. Facebook is creating a trusted identity system based upon our use of real names and the verification that a circle of friends know us. The online Personal Health Record (PHR) is subtly different from the trusted Facebook identity. The online PHR is being built with data linkages in mind. It is a resource that is, or will be, incredibly rich in transaction and linkage data based upon real world encounters. The PHR becomes like an online fingerprint.

What Google and Microsoft are building is a mechanism that they could leverage to validate that the person behind a LiveId or google health account is really the person that they say they are. This is not a binary true or false value, it will instead be a variable level of certainty - A level that is based on the depth of real world encounter information such as clinical history, claims information, family history and other data collected in the record and the number of authenticated touch points that link to the PHR.

Google and Microsoft could get incredible value from this information. Not from selling the information. Not from analyzing the information to push more ads. No, the value could come from the fact that this pool of data could become more valuable than our credit histories. The difference between the PHR and our credit history is that we, as consumers, have control over our PHR but only visibility in to our credit history.

Without releasing any contextual data about us Google and Microsoft could create the equivalent of a credit score that represents the level confidence in the authenticity of an account.

With the PHR sitting firmly at the intersection of the real and electronic world it is no wonder that these two giants are locked in a land grab battle for consumer mindshare.

Will Google and Microsoft resell my Health Data

A question that seems to be bubbling around on the Internet about the Personal Health Record platforms from Microsoft and Google is

"Will Microsoft or Google sell my Personal Health Data?"

The reality is that Microsoft or Google do not need to sell our personal health data. Microsoft's push in to health is a way to push the Windows monopoly. Adopting HealthVault is going to lead to hospitals, practices and software developers acquiring servers and software to connect in to the ecosystem that is being constructed. As devices become inter-connected we will probably also see the "Works with HealthVault" licensing program take off.

From the Google perspective a revenue model may be different. We will certainly see some linkage back to their Search and AdWords platforms. Google Health helps to keep eyeballs focused towards Google properties. On the developer side Google could easily provide open access to health data through APIs that preserve the consumer-managed privacy controls and generate revenue by throttling the API. They might for example allow developers to access thousands of API calls per day, week or month but require licensing to tap in to higher volume feeds. It is the developers that then create the business models to profit from these data feeds, but all the while the consumer continues to control what data they are releasing to which applications and services.

Health Camp Dc 2009 Intro

This is the introduction to HealthCampDc 2009. The Hashtag for the event is #HCDC09.

Health Camp Dc 2009 Intro

View more presentations from Mark Scrimshire. (tags: healthcare washington)

The Health Session at Social Media Club DC is a sell out

Tomorrow, Wednesday February 7th, IQ Solutions in Rockville is hosting a Social Media Club session. The topic is "Engaging the Health World Through Social Media." I have been asked to take part on the panel that is being moderated by Alexandra Rampy (@SocialButterfly). It is a real pleasure to be participating alongside Healthcare blogger, Dr. Val Jones (@DrVal), Christian Olsen and Joel Selzer of Ozmosis.

This should be a great panel, an interactive discussion, with not a PowerPoint in sight.

I have been invited because of my role as "chief troublemaker" and change agent in the HealthCamp movement. With HealthCampDc happening on Friday February 27th and HealthCampPhila taking place a month later on Saturday March 28th, this is a great opportunity to spread the word about these events.

I hope that anyone following the event is inspired to sign up for a HealthCamp event and join in the discussion about the future of Healthcare.

For those not familiar with HealthCamp, these are barcamp-style events focused around HealthCare. Healthcare is a complex industry with many different specialists engaged in the delivery of services.

Privacy issues create complexity and often stifles innovation and experimentation in the industry. Privacy is a double-edged sword. We have to trust that our privacy will be protected. At the same time, if we happen to be the victim of serious medical conditions that affect our quality of life then sites like PatientsLikeMe demonstrate that we are willing to sacrifice some of our privacy in order to improve our quality of life.

Privacy issues will come to the fore with Personal Health Records. Fears of our most personal information being accessible without our consent will have to be balanced against the risk of receiving incompatible treatments due to an ignorance of the full range of medications we are taking.

It always strikes me as ironic that when it comes to Health Records it is us, the health consumer, that are the only people in the health equation that typically does not have access to our records.

As I have discussed in an earlier post I believe Personal Health Records will be adopted by the senior members of the population. This will be driven by the quality of life issue. Our seniors will take advantage of Remote Tele Health monitoring equipment that will feed the Personal Health Record and allow vital signs to be remotely monitored.   

How does Social Media come in to play in the Health Arena?

I expect to see Social network tools being adopted amongst doctors and others with common interests. However, the real revolution has to come with the Personal Health Record.

We are the one common denominator in the health delivery equation. As such, we need to encourage systems to be developed that reflect this fact. If this is to happen then the Health Care industry needs to recognize and adopt some of the standards that are enabling information to be controlled by individuals. OpenID, OAuth and microformats are just three examples of standards that have much to offer in the Health Care arena.

I look forward to discussing these issues at the February Social Media Club DC meeting. If you come to the event please come and say hello!

Jaunt to the Junto on December 10th

Next week, on Wednesday December 10th I will be leading a panel at the Philadelphia Junto on Health and Data Portability. If you are in the area please come along. The event opens around 6pm and starts at 7pm. This will be an interactive audience discussion. I am looking forward to the discussion which is a warm up to the coming season of local HealthCamps (HealthCampMd, HealthCampDc HealthCampWv and HealthCampPhila).

Thanks go to Geoff DiMasi and the crew at P'unk Avenue for organizing the event.

See you in Philadelphia!

BarCampPhilly - an amazing vibe

I spent today at BarCamp Philly. You can check out the day through a number of routes. Try barcamphilly.org as the main site. Also do a search on twitter for the #bcphilly tag. The schedules are there on the barcamphilly.org site. The iphone app to track the schedule worked really well. Great work team! Is that software available for use at other events?

Roz (aka Stellargirl) and JPToto and others did a great job to organize a fantastic day at the University of the Arts in Philadelphia.

I ended up presenting a session on Data Portability in Health Care. The focus was on how to get consumer engagement. Let's drive a push for adoption of OpenID, OAuth and microformats from the consumer perspective. He have to take our health in to our own hands. There seems to be an increasing recognition that we need to address single sign-on and data portability in healthcare.

I talked with a number of great people like Mary Ann Geier and Phil Baumann. All are interested in Health Care issues. I know I have missed other names. If I did, please leave a comment below and register your interest on the subject of Health. The bottom line is that there is a real interest in launching a HealthCampPhilly. The HealthCamp movement is growing like crazy. We have HealthCampUK happening this coming Monday (November 10th). We have HealthCampMd, to be held at Stevenson University (formerly Villa Julie College) in January. HealthCampDc set for February at CareFirst in Washington DC. HealthCampWv courtesy of Bob Coffield happening in March 2009 in Charleston, WV. Last week HealthCampNash also got proposed for Spring 2009 in Nashville, TN. I am also looking at hosting a HealthCampBoston on April 24th, 2009 - alongside the Health 2.0 conference.

The momentum that is growing around HealthCamp just reflects the consumer dissatisfaction with the current state of HealthCare and the recognition that we, the consumer, can make a difference if we demand change.

At BarCampPhilly I also gave a couple of sessions on the use of JackBe's Presto platform. This is a mature Enterprise Mashup Platform that recently revamped it's development licensing. They now offer free perpetual development licenses. This is a great move to stimulate the developer community. The feedback I got on the platform was overwhelmingly positive. I would really like to see the JackBe platform at the Boston Health 2.0 conference providing demonstrations of how their platform can integrate information across disparate Health care sites. I definitely need to work on this as an idea.

A Mini HealthCampPA - Engaging consumers in HealthCare, DataPortability and all that

The discussion on HealthCamp related issues such as DataPortability was very stimulating. It took place at 11:00am in Room 1215. The issue was how we, as consumer, can drive the re-construction of the HealthCare system in a way that finally gives us access to the information about us - Our Personal Health Record.

Once again, just like last week at SocialDevCampEast, a good audience of highly engaged people participated. One of the most telling quotes came from one of the participants, geoff dimasi :

"I didn't realize I had so much to say on the subject [of healthcare]"

I need to reflect on those discussions but hope some of the attendees will add their comments to this blog. More later.

Off to BarCampPhilly this Saturday

BarCampPhilly is happening this weekend (Saturday November 8th). The event is sold out so it should be an awesome event.

I didn't get enough Geeking done this weekend at SocialDevCampEast so another top up session is in order. It also appears that there will be a few people attending that are interested in DataPortability and Health Care. I think I may well end up presenting a session on bringing Open Standards and Web 2.0 technology to Health Care. Will this count as a mini HealthCampPa? Let me know if you are:

a) attending

b) interested in participating in Health related sessions.

Attendees to BarCampPhilly have been given the opportunity to be featured on the BarCampPhilly.org site by answering the following questions:

• Who are you and what do you do?
• Why are you attending BarCamp Philly?
• If you were to lead a session, what would it be about?
• Tell us one random fact about yourself.
• Where can we find you? (url/twitter)

For What Its Worth, here are my bits and pieces.....

Who are you and what do you do?


My name is Mark Scrimshire and I am a troublemaker, troubleshooter, Internet strategist and blogger who has worked in and around IT for more years than I care to mention. By day, I have just taken on the responsibility for CareFirst BlueCross BlueShield's Web Strategy. This is at a particularly interesting time.
I also organize the HealthCamp series of events and am active in the Web 2.0 and Health 2.0 scenes. I am also a big proponent of the DataPortability movement.
In my past I have spent 18 months blogging for O'Reilly Media at AOL, producing a daily blog for AOL staff talking about the implications of Web 2.0 technology.

Why are you attending BarCamp Philly?

I am not a developer but I am a geek at heart. I really enjoy getting under the covers of technology and working out how it can be applied in new and interesting ways. I have attended a number of BarCamps and also run a series of HealthCamps. I really enjoy meeting and learning from passionate people. The energy at these events is just awesome.

If you were to lead a session, what would it be about?

As a big proponent of DataPortability I would like to lead a session talking about how this can and should be leveraged in the Health Care world. Via Twitter I have already been asked to take time at the event to give a de-brief on the happenings at the recent Health 2.0 Conference that took place in San Francisco in Mid October. So that my very well surface as a session if more people express an interest.

Tell us one random fact about yourself

My son (the UK jazz artist - Scrimshire - you can catch his random podcasts on his site) has challenged me to swim around a bunch of Greek Islands next year. I was daft enough to accept. You can follow my training on twitter using search.twitter.com.

Where can we find you?

You can find me on Twitter as ekivemark.That same name is often found on AIM and Skype too.I blog at http://ekive.blogspot.com.My profile can also be found on LinkedIn and elsewhere via Google.

OpenId closing in on the big One Billion

This week has been a busy week for OpenID. At the Microsoft Professional Developers Conference Microsoft announced that Live ID will be OpenID compliant. I am estimating that this will add about 380 million accounts to the approximately 500 million existing OpenID capable accounts courtesy of Yahoo, AOL, France Telecom and others. Google has been providing limited OpenID support but this week also announced their adoption of OpenID 2.0 support. Interestingly they are also moving to support OAuth. That is a big move.

It could be that the Google announcement is a knee jerk reaction to Microsoft's news. It seems that they are still developing some pieces of the service offering. What is interesting is that Google seems to have take a slightly different approach and some are claiming that they are breaking the OpenID standard. What they are doing is using the gmail email address as the key. This requires sites adopting OpenID to make changes. This is where the shouting is taking place. For an interesting assessment of the implications check out the Neosmart blog. They claim that Google is forking OpenID. Try to take this in your stride. Take a breath and scroll down to the comment left by David Recordon, one of the leading players in the world of OpenID. I have copied David's comments are here:

"Google is taking advantage of a feature in OpenID 2.0 known as "Directed Identity". This allows an OpenID 2.0 Relying Party to start the OpenID protocol flow using a known URL (Yahoo!'s ishttp://openid.yahoo.com/) to allow for "one click" style login dialogues. By performing discovery on this URL, using the XRDS XML format, the OpenID Provider advertises the OpenID Endpoint URL for the Relying Party to make a request against. Google is doing this correctly with the URL to perform discovery against being https://www.google.com/accounts/o8/id.

The piece that Google is currently doing differently is requiring pre-registration of each OpenID Relying Party before users can login to a given site. This does break the common deployment of OpenID on the web today, but Eric Sachs of Google has said on the OpenID mailing list (http://tinyurl.com/562mec) that this is temporary as they work to stabilize their OpenID Provider: "We just need to do the standard scaling, stability, translation quality, etc. evaluation to make sure there are no major problems. If we are lucky, that won't take much time. However it is more then likely that we will need to tweak things in our user interface to make it easier to understand, and unfortunately translating any such tweaks into 40+ languages takes awhile."

As for using email addresses as OpenIDs, this is something the OpenID community is talking about quite a bit right now; Google included."

I think it is clear, As Microsoft noted, OpenID is recognized as a maturing De Facto standard for authentication. The major Internet players are all supporting OpenID. Now it is time for enterprises to recognize the advantage of adopting a global De Facto Authentication standard. This was part of our discussion at Health 2.0 and HealthCampSf last week.

I have been pushing the idea of using OpenID and OAuth, and other elements embraced by the DataPortability initiative, across the Health Care industry. It is now time for the industry to take that leap of faith and make it happen.

Health 2.0 - Pharmacy and Medication

First a series of demonstrations from:

• KwikMed - Prescribing online from a Drs perspective
• Mirixa - Attacks the challenge from the point of the pharmacy and pharmacist
• InnovationRx - Providing medication management services to address non-adherence
• Zumelife - Zuri is a prototype device/service to receive reminders and record activity. The examples was focused around diabetic users. There will also be an iPhone application with a to do list for medications, diet etc.
• DoublecheckMd and PharmaSURVEYOR - dealing with drug interactions and drug safety using open platforms and data interoperability across companies.

One of the things that came across in these exceedingly brief 3.5 minute demonstrations is the potential to integrate these tools together to add new value. In particular the opportunity to take some of these services mobile.

Zumelife looks to be a fascinating development because it embraces more than just prescription drug monitoring. It allows the users to manage diet and other aspects that address the whole wellness management for an individual.

Health 2.0 and a sharing experiment

At the Web 2.0 Expo in New York I was lucky enough to bump in to an enterprising guy, Andrew Hyde. Andrew and I both took part in the Web 2.Open un-conference sessions. At those sessions Andrew shared a simple little application that solves an age old problem at meet and greet type events and conferences.

Don't you just love typing in all of those business cards that you swap at these events. When you have a sit down at lunch and discuss an issue with a group of people wouldn't you like to continue the conversation afterwards?

Andrew offered a simple solution: grouplist.us

I have used Grouplist to create a shared contact list in under 60 seconds. This web-based application then allows people to input their contact details and any member of the list can download specific contact details in vCard/hCard format, or download the entire list. This format is supported by most Address Book applications. Making it a simple process to add the basic phone and email information.

At the Health 2.0 Conference I recommend that we create shared contact lists for the various breakout sessions. We did this at the Health 2.0 Accelerator yesterday. What will be simplest to do is to use a common password for all the conference pages, for example "health20"

Separate contact lists can be created in under 60 seconds by a session organizer. They then need to share the name of the list.

For example if you attended the Physician Engagement unconference session (Session 6) at lunchtime on Wednesday October 22. You can go to http://grouplist.us/h20unconference6 and enter the password "unconference". You can then add your basic name, phone number, email address and twitter handle. Then check back later and see if any other participants have done the same.

Andrew Hyde has built a simple but focused applet that solves a real frustration at conferences. Gice it a try at http://grouplist.us

Accelerating Health 2.0

There are about 24 people physically in the conference room at Manatt Health Solutions in San Francisco. There is also a conference line with people listening to the session.

Health Care is not a free market.

The employer holds the purse strings.

Consumers need to be engaged where the dollars flow from which is invariably the employer. Google and Microsoft have recognized this in just the last two months.

What do we need to change: Control.

If we achieve one change it is the realization that we need to let go and not worry about controlling all aspects of the relationship with the consumer.

At the center we need to focus on Infrastructure, Information and Incentives.

What are we accelerating towards?

The concepts I have been promoting at HealthCamp (such as HealthCampSf this coming Friday October 24th) We need to leverage standards initiatives that are evolving in the Social Networking space. We need to do this because that is where the consumer, the person at the center of the challenge, is to be found.

Some examples of current projects:

PharmaSurveyor and DestinationRx explained by Erick Von Schweber of PharmaSURVEYOR.

PharmaSurveyor is focused on Drug interactions. DestinationRx is concerned with cost effective sourcing of prescription drugs. Initial collaboration and interoperability has now extended to Mike Kirkwod's Polka DOT com and Barry Appelman's Doublecheckmd. The interoperability is using a drug list XML (CCR) on a peer-to-peer basis.

This is the same format that CVS uses. They issue 10-20,000 records per day. Google can consume this same format in Google Health.

Kryptiq can grab CCR clinical information record from Sage Software's Health Care software and post it to Microsoft's HealthVault.

Private Access has a workflow tool that can reach out to the patient and get preferences around how the patient want's data to be used. This for example allows patients to choose if they want to be discovered for recruitment in clinical trials.

Health 2.0 Accelerator is focused around consumer centric solutions. Helping consumers Co-Manage their care.

Should the accelerator focus on how to define and share clinical data. Does this mean we should apply microformats to health data to enable sharing?

I think there is mileage in the Health 2.0 Accelerator taking a role as a Health focused extension of the DataPortability.org initiative.

Geeking out at Web 2.0 Expo

I ducked out of the Finance 2.0 for Early Adopters session and dropped in on the Comet session.

Web Sockets in the HTML 5 specification supports bi-directional communication over a single socket.

With the HTML versin 5 spec the HTTP protocol can upgrade to WebSocket protocol enabling bi-directional flow between client and server over a single socket. This means it traverses firewalls easily and it eliminates the need for middleware components.

This was really just the warm up for me. The session I really wanted to see was Joseph Smarr, the Chief Platform Architect from Plaxo. He makes complex subjects clear and somehow manages to do that while talking at a rate of hundreds of words per minute. His talk is one of the last at the conference and addresses implementing the Open Web.

Joseph is going to talk about OpenID, OAuth, OpenSocial, PortableContacts and probably more. Plaxo has been on the forefront of the OpenWeb and portability of information, particularly address book information across the web. Their technology was attractive enough for them to be acquired by Comcast earlier this year for a rumored $150-170M. This talk will probably be similar to the one given to Google Developers back in May 2008.

This is a fast moving development space so it will be interesting to see how things have evolved since the first talk in April 2008 at the Web 2.0 Expo San Francisco.

Off we go......

"The Web is going social"

OpenI, Oauth, OpenSocial, Microformats.... Jabber is the forgotten standard that is a critical glue component around XMPP. Yes, the stream that Twitter keeps controlling.

"The Social Web of today is broken"

Each web site assumes they are the first to ever be social. Yet another silo gets created. Or they give up and become a widget inside Facebook.

Help is on the way....

New building blocks:

- Who I am

- Who I know

- What's going on

Who I am

Create a portable, durable online identity. On the web we pretend we have never met before. But that is changing.

OpenID

- Sign up with an existing account

- Link and share your profile data between sites.

This is a powerful building block. You can build a trusted connection that allows you to share information between the sites.

AOL, Yahoo and soon MySpace are OpenID providers. Google also does this for some of their properties.

You can consolidate your identity though microformats using

rel=me(XFN)

Only I can put a me link on my web pages.

Most sites that ask for your home url and they add rel=me links. This allows the Social Graph to be trawled.

The advantage for site owners is that you don't need to get members to upload photo, videos and other content. Yet it can still be available to you.

This is an open standard so you can build this content on your own web sites.

Build and maintain real relationships

Contact APIs

- Find people from your current address book

- leverage previously established relationships.

Web mail address books have been the best source of information up to now.

Google, Yahoo and others have implemented these contact apis so you don't need to reveal your userid and password.

OAuth

- Share private data between trusted sites.

This has been a big success in the last year. It is a standard way of granting access to another site.

The big advantage is that you can apply a scope to the access. It could limit the type of operations that are possible or the duration for which it is available.

Friends-List Portability

OAuth allows updating of your friends list. ie. Continuous discovery.

What's going on?

OpenSocial

- Build social apps that can run anywhere.

RSS/Atom

- Syndicate your activity to share with others

- A general mechanism to share updates. Couple with OAuth to limit access via a protected channel.

Jabber (XMPP)

- Real time update stream between sites.

This is an inherently federated protocol. It is a core part of Identi.ca and laconi.ca

GNIP is a middleware provider that is making this easy for service providers.

How is this evolving?

- Emerging Identity Providers. The big portals are adopting these standards to retain users.

- Content Aggregators. As the number of site grow then a middleman acting as a discovery engine will be useful.

- Social Graph Providers. Leveraging friends lists.

XRDS-Simple - A simple service directory document.

PortableContacts

This is a simple standard, similar to vCard and built on OpenSocial that enables the discovery of contact information. OpenSocial will integrate PortableContacts.

The Emerging Scenario is

OpenID to sign in.

Looks for X-XRDS-Location

XRDS-Simple to discover availablew APIs

WWW-Authenticate specifies OAuth

OAuth Discovery via XRDS provides OAuth endpoints.

After OAuth grants access users get a token that enables access.

This provides an end-to-end process for reaching a site and accessing contact information without requiring custom code to be developed for each site.

We are moving towards Write Once and Work.

While providers use different terms they support the same handshake:

- Facebook connect

- Myspace dataavailablity

- Yahoo Y!OS

- Google FriendConnect

- Plaxo Pulse

Facebook is the outlier - the only one not using standards. However they conceptualize the same way and could at somepoint swap out standards "under the hood."

Developers are advised to use the open stack. Once implemented it will be easy to adopt the same handshake process with Facebook.

Brady Forrest asked a great question: Usability with OpenID is an issue that "freaks out Grandmas"

The good point is that because the big players are using open standards the work they are now focusing on to improve usability will feed back in to the Open stack. Some good work is going on how to explain the process to users.

.

HealthCampNy and Identi.ca

The Web2Open schedule is starting up at the Web 2.0 Expo.

The schedule for the day (as at 10:30am) is on twitpic.

I have a session for HealthcampNy on the schedule at 11:35. The topic for discussion is

"DataPortability, Its not just Social it's good for your Health"

One of the key developers of Identi.ca, Evan Prodromou, is co-hosting the session with me. We will be talking about OpenId, OAuth, Microformats, The Higgins Identity Framework and other aspects of data portability.

I want to help people realize that these standards can be applied not just to Social Networks but also to more challenging issues like the sharing of Health Information.

I am heartened by Tim O'Reilly's call to work on stuff that is important. Our Health and fixing the broken HealthCare system is important!

HealthCampDc - looking back and looking forward

HealthCampDc took place on Friday September 12th at CareFirst's DC offices. It turned out to be an amazing event. I hope some of the participants will add their comments to this blog to fill out this report and confirm the value they experienced.

The event was much smaller than other events I have been involved with such as SocialDevCampEast and BarCampRDU but that is to be expected when it is an event focused on a specific area - The transformation of the HealthCare industry.

A number of the barcampers at HealthCampDc were new to BarCamping. That didn't stop them jumping in with both feet and participating to the fullest.

The discussions flowed easily all day covering a range of topics. Here is the introductory slideshare that set the theme. I had planned to present about Open Standard Security but since the deck was already on slideshare we spent time on other topics.

Susannah Fox from the Pew Internet and American Life Project gave us an insight in to the challenges of conducting robust surveys that cover fast emerging areas, such as the impact of social networks on health information.

Jen McCabe Gorman lived up to her energizer bunny tag on slideshare by stimulating the conversation further by describing the virtual-bricks-and-mortar-provider-patient continuum (see the diagram below)

One of the messages that came through on multiple occasions was "build on existing behaviors and relationships - It's not all about the technology!" In one example the role of the barber shop in inner cities was cited as a great example of how a health education message was successfully disseminated using the influential role of the barbershop in the community.

Along those same lines it is important that we remember to design our message and services so they can be disseminated through multiple channels. Mobile is a critically important technology in this respect. It is the primary, often the only, contact method for growing segments of the community.

David Hale from the Library of Medicine at the National Institutes of Health gave a great demonstration of an Adobe Flex-based application that is close to release. The application is a drug identification tool that allows patients, physicians and other medical staff to explore the database of pill information by searching textually or visually, by shape, color or markings on pills.

How to stay connected?

A fascinating discussion took place where people shared how they stay on top of the torrent of information. The startling thing is that our peers are our number one source. Whether those are our physical colleagues or are contacts we have made across the vastness of the Internet. We get our best information by tracking others that we trust, or have some sense of shared community with. Beyond our peers the tools used include:

• email
• Twitter
• Del.icio.us
• Google Reader
• Google Search
• Google Alerts
• RSS Feeds
• jing (in beta)
• Summize (search.twitter.com)

When it comes to technology, Trenor Williams made a very telling comment that I will repeat as best I can here. "Our newest generation of care givers are incredibly tech savvy but nobody is equipping them with the skills to translate that knowledge so that it can be used to improve care delivery."

Wow! That thought has been bouncing around in my head every since I heard it. It goes to the issues in education and how we are equipping our school and college graduates to be able to filter, analyze and apply the growing flood of information and tools that they have at their fingertips.

Discussions through out the day focused around engagement. How do we engage the community? How do we engage the providers? How do we engage the legislators?

Another theme that emerged during the day is that each participant at one point or another felt "kinda stoopid" what we realized by this was the fact that the HealthCare continuum is so vast that we can't be experts in everything. The problems in the HealthCare industry are also so big that no one company, not even game changers like Google, can solve the problem alone. We all have to work together to make change happen.

Despite the scale of the challenge being so great one realization was reached. The Washington DC area is at the epicenter of the transformation of HealthCare. All the major providers compete in this market. Major Provider networks operate, researchers are here, Venture Capitalists are here, Technologists are here, charities representing critical diseases have representation here and the politicians and Federal operations that will pass legislation that will drive change are here. Everyone is in this market. The Washington DC are has all the elements to be the epicenter of Health 2.0.

From this realization came the commitment for each participant at the event to spread the word and bring along influential change agents to the next HealthCampDc event that will take place in early 2009. For those that can't wait until then there will be a HealthCampNy event at the Web 2.0 Expo in New York on September 17-18th. Jen McCabe Gorman is busy helping to organize the Health 2.0 Conference in San Francisco on October 22nd-23rd. I very much want to be there and would like to organize a HealthCampSf on Friday October 24th. Is anyone interested in helping make that happen? Can you help provide a venue? Let's make it happen - leave a comment here or ping me on Twitter.