This is the data we have today, can we do better? From the well-done Deloitte 2008 Consumer Survey

Ideas requested….

In the patient-centered technology world, there are a lot of different measures that various organizations use to show the size / accessibility of their online services. The challenge of all these numbers is that when someone tries to figure out who the leader in this space is, or where they are more likely to have access and involvement, it’s unclear. Everyone uses the numbers that capture the data they have (and by extension that are the most optimistic sounding - it’s human nature).

Some measures use number of patients on a provider’s web site (”We have 86,000 patients verified for use of our portal”), some use percent penetration (37 % of adults enrolled or that receive care here are online - that’s the one I used). These numbers can be confused by different denominators (adults only? all enrollees?) and services offered (access to what? claims data? e-mailing doctors? lab results?). One metric we began using at Group Health was, “% lab results reviewed online by patients” - this crosses primary care and specialty care practices, and since the assumption is that most patients want the results of their tests, may be a good measure of how much a provider promotes access to clinical data, other things being equal.

Why is it useful to figure out?

As I mentioned in a previous post, we currently measure penetration of electronic health records in practices (it’s scarily low still); however, this doesn’t say very much about the value to the patient, the customer. So:

1. If a patient can compare organization x / provider y in terms of the accessibility of the data - through whatever channel - there may be better incentive to compete on something that matters a lot - involvement in care and partnership.
2. If a supporting organization is working to promote patient access across a constituency, they can understand which organizations need more assistance quickly.

Agree? Disagree?

Throw out some ideas for a measure - is it a combination of what is offered (scope of content), how many people are actually using what’s offered (satisfaction with content, priority of the organization in supporting services), and service measures (messages responded to in a timely manner, test results shared)?

Kaiser Permanente provides one example that I am using with permission. As the probable largest personal health record in the world currently, there were 2,140,017 members with access to secure features as of the end of Q1-2008, out of 8.7 million members, and 63.6 % of registered members signed on two or more times in the past 12 months. There are a suite of services on kp.org that include messaging your doctor, access to lab test results, after visit summaries, and a comprehensive health encyclopedia.

This does matter to patients today, like me, as Jen McCabe Gorman pointed out in this post on her blog. She also pointed to a comment on my twitterfeed as well: I am, and I won’t.

• EPJ-Observatorium - From Denmark - the EHR Observatory - which follows dissemination of EHRs in that country. Why not a PHR Observatory in the United States?

DesRoches, Catherine M., Eric G. Campbell, Sowmya R. Rao, Karen Donelan, Timothy G. Ferris, Ashish Jha, et al. “Electronic Health Records in Ambulatory Care — A National Survey of Physicians.” N Engl J Med (June 18, 2008). Electronic Health Records in Ambulatory Care — A National Survey of Physicians.

This is an informative study of electronic health record penetration by the group at Massachusetts General Hospital, funded by the Office of the National Coordinator.

The news? Not very good. Only 4 % of physicians have “fully functional electronic record systems.” The numbers are even more concerning if you look at small practices, where the overwhelming majority of Americans receive care: 2 % in practices with 1-3 physicians. In other words, most American physicians use paper based medical records.

There are a few (among several) very good things that this research group has done:

1. They have defined what is meant by “electronic health record” so we can track this over time
2. They have found that there was NOT a difference in rates of adoption among providers serving minority patients, uninsured patients, or patients on Medicaid

With that in mind, here’s the hope that this brings:

1. If we’re able to define what physician access to an electronic medical record is, let’s now define what patient access to that same electronic medical record is.
2. Let’s begin to use that metric as a complement to, or instead of the physician access metric. In other words, the EHR is not really implemented unless the patients can access the data in it to manage their health and participate in their care.
3. Let’s be excited about the fact that with adoption on par among providers serving the uninsured, minority, and patients on Medicaid, that patient access to the data can become as standard for these patients, as they may become for commercially insured patients.

On the topic of the “patient access” metric - I don’t think we currently have a good definition. One organization might say, “We have x-thousand patients accessing their clinical information through a portal.” Another might say, “We have x-percent penetration of our patient base accessing a portal with their clinical information.” Yet another might say, “X-percent of chronically ill patients are accessing a PHR that contains their claim data.”

Not to bring up the “c”-word (crowdsourcing), but maybe we should get together to figure out what patients consider “access to data that allows them to fully participate in their care.”

In the meantime, thanks to the team at Mass General and ONC for tracking the physician side of things - great work as always.

• Accessing Health Records Online 205562-7 : C-SPAN Video Library, Created by Cable. Offered as a Public Service. - Jack Cochran, MD, Executive Medical Director of Kaiser Permanente talks about online medical records.

Published! The report I co-authored with Josh Seidman, Ph.D. from the Center for Information Therapy is now online. It describes our experiences out “in the rest of health care” understanding the environment that supports patient centered health information technology. My conclusion: we can make it happen.

Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools - CHCF.org

• An Exploration of Technology Diffusion — HBS Working Knowledge -
• The New Math of Customer Relationships - Which comes first though, customer (patient), or employee (provider) satisfaction in this equation?
• Endless Meetings Speed Up the Pace of Change on the Gemba - Sometimes spending more time to achieve consensus is worth it. I am now wary of the excessively timed meeting.
• Tumblog in WordPress - my own personal Twitter? - D’Arcy Norman dot net - Grand unification for wordpress and Twitter? Interesting to think about…
• What is the World Café? - An interesting conversational process. Could it replace traditional CME? I think something should…
• Diffusing Management Practices within the Firm: The Role of Information Provision - The eternal issue of diffusion

I have been intrigued by EMC’s work in managing an employee personal health record - it seems above and beyond (in a good way) how an human resources function and grow and support talent. Also, time to upgrade Office for Mac. It went OK. I’ll update “my own CIO” tools list in the near future.

• Employers Find Benefits with PHRs - More info about EMC and its employee PHR
• News - - Gainesville.com: Dean admits student without backing - It’s interesting that this is posted in the entertainment section. That aside, this looks concerning. I don’t understand how a student is admitted to medical school on a personal recommendation, and without taking the MCAT. How will we have a diverse medi
• Event Calendar - A way to put upcoming events on a wordpress blog
• TimeDriver - Coming Soon! A revolutionary online personal appointment scheduler - A very high potential meeting scheduling package. Given that Timebridge only allows 5 slots to be determined, this looks very interesting.
• GE Healthcare-Press Release-NCHL and GE’s Institute for Transformational Leadership - I didn’t know about GE’s work in this area. It looks like they are doing work in LEAN as well as Six-Sigma, which they are known for.
• Report cites UA med school crisis | www.azstarnet.com ® - Sad news from my alma mater, related to the difficulties medical schools are having balancing revenue and their mission.
• D.C. Not-for-Profit Offers Model for IT Adoption - iHealthBeat - More progress in DCPCA’s EHR adoption efforts
• Burlington Free Press.com | Fletcher Allen’s new EHR - Fletcher Allen in Vermont gets approval to go ahead. I believe this is an Epic Systems install, bringing with it the possibility for excellent patient engagement with their health system as a result.
• Database Problem with Office 2008 for Mac - Office 2008 Install problems, just in case

I recently pulled several articles to help leaders understand Web2.0 better. That’s what’s in the links below.

The image is one that I snapped while taking a flight recently. It reflects the accommodations an already troubled industry is having to make to support our health (or lack thereof).

• CDC trends in obesity 1985 2001 - CDC trends in obesity 1985 2001. Disturbing.
• A List Apart: Articles: Take Control of Your Maps - Useful article about integrating mapping visualization
• A List Apart: Articles: Accessible Data Visualization with Web Standards - Really nice article on simple data visualization using CSS
• VM — Being There, Mar 01 … Virtual Mentor - The use of telemedicine technology, while convenient, can at times be inadequate, as shown in the portrait painting entitled The Doctor, where the physician stays at the bedside of a gravely ill child and offers his presence as comfort to the family. Virt
• Notional Health Server | Economist.com - A flagship service adrift - problems with online booking at the National Health Service
• Health 2.0 | Economist.com - Technology and society: Is the outbreak of cancer videos, bulimia blogs and other forms of â??user generatedâ?? medical information a healthy trend?
• Social networking | Joined-up thinking | Economist.com - Social-networking sites are not just for teenagers. They have business uses too
• Sources and acknowledgements | Economist.com - Helpful links for Web2.0 research from the Economist
• What sort of revolution? | Economist.com - Both good and badâ??but it’s too early to say in what proportions
• The wiki principle | Economist.com - Are many minds better than a few?
• Compose yourself | Economist.com - Journalism too is becoming interactive, and maybe better
• It’s the links, stupid | Economist.com - Blogging is just another word for having conversations
• Among the audience | Economist.com - The era of mass media is giving way to one of personal and participatory media, says Andreas Kluth. That will profoundly change both the media industry and society as a whole

Congratulations Kaiser Permanente.

While many PHRs in the market are finding it difficult to attract users, Kaiser Permanente has long offered its members access to key features in managing their health online at kp.org.

This is a very important statement. The experience of Kaiser Permanente members challenges the idea that “patients don’t want PHRs.” They absolutely do - if the PHR helps people manage their health and connect to their health care team.

Two Million People Using Kaiser Permanente’s Personal Health Record