The Red Cross Should Be in the PHR game

HealthNex continues to be impressed with the richness of the eHealth ecosystem, and the thoughtfulness of the blogger community growing around it. In our continuing effort to drive dialogue we're delighted to welcome to that virtual discussion Shahid Shah, a healthcare IT expert and host of the Healthcare IT Guy blog. Shahid's background includes work as Chief Architect at American Red Cross, Architecture Consultant at NIH, and SVP of Healthcare Technology at COMSYS.

Guest Blogger
Shahid N. Shah, Chief Architect, Netspective

As most of my readers at The Healthcare IT Guy already know, I’ve served in many consulting R&D capacities at The American Red Cross (ARC), including Chief Systems Architect for the blood collections IT system. Although it’s not commonly known, if you’ve ever given blood at any Red Cross facility, you have an electronic record of your demographics, lab results (for blood tests), and other similar biomedical information stored at the ARC data centers.

If you’ve given blood somewhere else, they also manage your data but it’s not in a centralized manner like ARC’s. I’ve long considered the ARC medical records as a solid basis for a personal health record (PHR) that could be offered to, at minimum, blood donors but could be expanded to non-donors to include any citizen. Think about what this might mean in time of disasters – something that the Red Cross helps manage with artful skill already.

As you may have seen with public reports (and perhaps internal reports) people in disaster areas have a difficult time getting access to their medical records. For example, from the Sep 19, 2005 New York Times article “Doctors Join to Promote Electronic Record Keeping,” they mentioned:    

…last week, in the aftermath of Hurricane Katrina, government and private health care officials were rushing to build an electronic database of prescription drug records for hundreds of thousands of people who lost their records in the storm. Health and Human Services Secretary Mike Leavitt said the chaos wreaked by Katrina “powerfully demonstrated the need for electronic healh records.

A simple  “disaster time personal health record” system that would allow people to store a rough medical record such as demographics, allergies, immunizations, medications, physicians, forms etc that would be useful in a disaster. I think it’s time for the hospital and care delivery communities to request a service such as PHRs from the Red Cross.

Red Cross supplies about 50% of the nation’s blood to roughly all of the nation’s hospitals. If anyone already has reach into the hospitals, it’s the ARC. And, with an appropriate technology solution put into place by the ARC they could become part of the NHIN and actually make PHRs work for a useful purpose (disaster-time).

I’m pretty sure my idea will work because I know that the ARC already has most of the modern technology it needs already in place (networks, architecture, etc). And, for the other 50% of the blood suppliers ARC could manage their data for a fee for service.

Ultimately the problem may not be sheer willpower to do it but a business model (after all, ARC charges money for collecting and\r\ndistributing blood and can’t do it for free). My guess is that it would cost about $3 to $7 per person per year to operate but that ARC could charge up to $50 to $100 per year per person to run the system for them.

Donors could get the system for free but ARC could collect money from the government’s NHIN funds. If you’re not a donor but want a PHR you would be charged. Another revenue source might be to sell the service to local communities (counties, states, etc.) so that ARC would run the system but charge the county for number of residents.

There are many business models that might work but in any case ARC could make some decent money while doing considerable good in time of a disaster. And, ARC could definitely use the money – they do great work but don’t always have great funding.

The beauty of the system is that using their existing system ARC already has portions of medical data for millions of donors in a homogenized and centralized database (which I helped deploy). And, they’re working on upgrading this large database to take on growing information needs right now. I’ve discussed this idea with some other ex-ARC colleagues and they think it’s a good idea, too, but we haven’t been able to convince folks within the Red Cross to take it seriously. It’s not that they think it’s a bad idea; just that it’s not a priority.

Perhaps the ARC customers like hospitals and community groups or even local governments could make noise to get the idea heard and acted upon. I’d be happy to help.

IBMHealthNex

Comments

[Christina]

This is an idea worth exploration! I also see value for donors. If we have a PHR that is compliant with the donor questionnaire, can we use it instead of having to answer all of those questions each time we donate? Perhaps we would have to update our prior responses at the time of the donation, but a more efficient process might make it easier for donors to find the time to donate!

[Shahid N. Shah]

Christina, yes, it could definitely optimize the donation process if an online process was instituted. The Red Cross is one of the most respected organizations in the world but is, like most healthcare organizations, very conservative with its IT expenditures. It has spent well and architected nicely its internal system but hasn't really spent much time on consumer-end (donors) connections to their internal systems. We'll probably see that changing soon.

[Jack Mason]

Shahid:

I second Christina's thoughts, and will drive some discussion around this with my IBM colleagues now that we're clear of Thanksgiving. What if there was some kind of open infrastructure to allow a Red Cross donor, or any blood donor, to use this proto-PHR as a starting point for their full health record.

[Marty]

You know what? People can't even manage to do EMAIL without falling for phishing scams and spam - now you think that a PHR - where the patient is managing data about their own health information - is a good idea?

Let's also talk about authentication and privacy. We can't even come up with a system that rationally handles identity management for something as silly as blog posting and internet access, what in the world has led anyone to think that we could do a tiered, progressive access model, with multiple writers to a record, element by element security rules, multiple "owners" and proxy owners of a record, not to mention machine-to-machine transportability.

It's a "meals in a pill" bit of futurism that has no consumer benefit at all, and is another product of egghead "experts" who bring us things like Thalidomide and Vioxx.