Medicine 2.0 (#Med2) Personal Health Records Where are we now?

On the fly notes from session I am attending at Medicine 2.0...

A Large cross-cultural study in US and China. Focus on Chronic Disease Management - Study by Yunan Chen of University of California - Irvine.

How does the management of medical records by patients impact outcomes.

Informed Activated Patients interacting with Prepared Proactive Teams.

In China Patients get their medical record at the end of outpatient consultations. Even if only on paper.

A long established culture of the patient maintaining a life long record.

What do people do with their records?

• Most patients bring medical records. Many records were more than 10 years old.
• Most patients prefer to have their record rather than leave with the hospital/doctor. It is easier when they transfer to another doctor/hospital.
• Medical record is treated like bank account
• Frequently reorganize records to make it easy to share with clinicians.
• Patients rarely read medical records - but do read lab results - for chronic disease patients it is because they are familiar with details or they have low health illiteracy so can't understand what the doctor wrote.
• Patients actively share information with doctors and clinicians
• Records may include X-rays and charts.
• Chronic Patients often include charts for readings taken at home. Patients do work to help Clinicians review their records.

Implications:

• PHR needs to be mobile
• Shared responsibility with providers
• Information needs to be integrated from providers and home care.

Scandinavian research on Diabetes Portal for Children

Modern Diabetes care has a lot of self-care. Cornerstones are:

• Insulin
• Nutrition
• Exercise

Patient education is central to managing disease.

The Portal project (Diabit) was non-commercial with bottom-up collaboration.

The content:

• Patients and Parents Community (message boards, blogs)
• Local Provider pages

Implemented using simple, open source technology.

Median age of patients was 14 years of age.

Three main themes:

As a management tool - source of reliable information from local clinicians. Led to feeling of security and control amongst patients and parents.

As a generator - portal visits generated more info than expected. This led to increased use. Message boards were great for communication and peer-to-peer discussion. Helped parents and patients realize that they were not alone.

As a gatekeeper - Closed, secure access discouraged use. Difficulty changing passwords etc. Usability and password control discouraged use. Users don't like to use systems with logins.

Conclusions:

- Great management tool

- keep it simple

- keep it open whenever possible.

- keep it rocking with fresh content and news

www.diabit.se

They are looking at using Facebook connect/OpenID integration to simplify the login process by allowing use of existing ids.

The Value of Multi-Tenancy Architecture in Healthcare

Dr. Louis Cornacchia

The problem - Siloed data systems , web multi-instance architecture, EMR uptake at 4%, RHIO business model is unsustainable.

NHIN not real time = not sustainable

Google, Microsoft, Dossia PHR's - uptake <6%

Complexity of medical data makes it hard to structure data.

Solution: ePatient - empowered to manage their healthcare

Physician is consultant.

Doctations: Multi-Tenancy Software As a Service.

...but is it scalable?

Multi-tenancy system is more cost-effective on a ration of 16:1.

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)

HealthCampDc kicks off at CareFirst in Washington DC

The event is finally here. Over 40 people have signed up to attend HealthCampDc at the CareFirst offices in Washington DC near Union Station.

The event will be going out live over the Internet. I expect a number of participants to be actively blogging and tweeting. We may even get video streams running.

To monitor the live conversation check out the CoverItLive widget here in this blog.

I am excited to be welcoming people to this event. Just looking over the roster of attendees tells me that we should have a lively discussion with experts from the community and all areas of the Health Care industry.

The Stimulus Bill (aka the ARRA) turning Health Care on it's head?

I have just got back from the "World Health Care Congress Leadership Summit on Consumer Connectivity". It was a lively event as you can see from the event streams on Day 1 and Day 2.

I spent some time at LAX while waiting for the plane home talking with @bobcoffield. I believe there could be a lot of interest in running a workshop to dig deeper in to the health care privacy issues that are impacted by the American Recovery and Re-Investment Act (ARRA or aka: The Stimulus Bill).

Would you be interested in a workshop event?

I was thinking about setting up a special HealthCamp Privacy workshop that could be held in conjunction with the upcoming Health 2.0 Conference which is being held in Boston on April 22-23.

There would have to be a fee paid by participants to cover the cost of setting up this event. Leave a comment below, or send me twitter message to @ekivemark so we can gauge the interest, or even send me an email just convert the address to a legal syntax.

GPC as business model

Robert Scoble gets chided on a regular basis but he often hits on important issues. Today Robert hit a growing issue on the head when he talked about Google Reader needing Granular Privacy Controls (GPC). The current hubris in the blogosphere about changes to Google reader that make shared feeds completely public rightly brings Scoble to the conclusion that Google needs to build granular privacy controls in the same way that Facebook offers to their users.

I want to take this discussion a step further. Scoble is on to something with GPC. I have been looking at the adoption of Web 2.0 technologies inside the enterprise for quite some time. There are some amazing tools out there that can add function to a company's technology tool portfolio. The video space is a prime example. YouTube, Viddler and Revver are examples of great video infrastructures that companies could leverage rather than build their own platforms. However, the biggest issue I come up against time and time again is security and confidentiality. There is a vast amount of information that organizations don't want to freely share on the Internet - The video of a CEO's comments to his management team for example.    

Many startups look to advertising as a source of revenue for their business. I urge them to think different. Granular Privacy Controls can be a powerful tool in monetizing their service. If you can provide privacy features that allow me to keep a company video private and embed it in a Wiki, such as Near-Time, or on my company intranet, then you have a service that companies will pay for. Price the service at an attractive level that would make a company look dumb for building the infrastructure in house. Make it easy to purchase and provide the tools to make it easy to securely embed your services in other sites. I have been experimenting with Zoho Creator and Viddler video feeds to embed private databases and videos in to sites that have a limited and controlled audience. I do not want these feeds out in the open. I don't believe I am alone in having this need.

So Robert, Thanks for opening the conversation. Granular Privacy Controls need to be given serious consideration by established service providers and new startups.