I started off a presentation-in-the-works to students in the University of Washington Executive MHA program, led by David Masuda, MD (who, sadly, doesn’t have a blog, just a Twitterfeed, it’s a journey…), with the words, “This is a beta test,” and I’m glad I did.

The beta test part is true, since I was asked by Carolyn Clancy, MD, from Agency for Healthcare Research and Quality to reprise and elaborate on a talk I gave at the American Board of Internal Medicine Forum in July for a seminar at AHRQ later this month. That was a 10 minute presentation, the one coming up is a little more full. The way I like to do these when the presentation is in evolution is practice to myself, of course, but also to test with a smart audience to read the feelings/emotions that are created (which is what I think a presentation is for - read more about this here) and see what ideas resonate well and which ones don’t. I usually tell the test audience that I’m testing, and it really helps, because it engages the discussion beyond the content, to how to make the content help other people after this group. Synergy.

Luckily, Dave and his co-students gave me the opportunity to do this.

Before it was my turn, I got to see Rick Rubin, President of Washington’s OneHealthPort in action, talking about community collaboration in the health information technology space. In my travels, I have seen that OneHealthPort is really a gem in the area of health information technology (when people find out about it). It’s company that supports collaboration among potential competitors who jointly have a business need for this collaboration. Whenever I mention that it exists on the East Coast, I have always gotten a good amount of interest in it (which I in turn forward on to the OneHealthPort folks).

I didn’t know before this day that Rick is from Boston, which probably accounts for some of my draw to his style. I think OneHealthPort should get more exposure nationally as a functional model for community collaboration and I reflected on the fact that doing business behind the Cascade Mountains in the Pacific Northwest sometimes shields the nation from some really good ideas. Place matters.

My turn - I worked to combine my work at Group Health with my work at California Healthcare Foundation, and beyond, with Participation as a theme, which is really where I have come to in terms of what I am about professionally. I think it went okay as a first run. I got great feedback from the students (all accomplished health professionals in their own right). I included some information about the 60 Minutes piece about Cedars Sinai and heparin. Luckily someone in the audience had first hand experience with this situation, and I need to adjust the presentation about this - it’s a reminder to be careful about telling other people’s stories, they know their stories better than I do (and vice versa).

One of the physicians in the class, who’s an Infectious Disease specialist, let me know that this approach to health care resonated with him as a physician supporting HIV patients, and how it was when his cohort of specialists began practicing a new way based on the needs of his patient population. I thought this was great to hear - I tell people that my cohort of physicians (Generation X) went through medical school during this time, and as a result we (I) graduated with the idea that I would work with patients who would know more than I would about their condition (which I embraced).

As far as the presentation I need to tighten it up more, and link every section to the concept of participation, and maybe a little leading on what should be done to foster it (study it in the leadership context among health providers? study it in the leadership context among patients guiding health systems? Going beyond studying participation of patients in their care). One of the parting commenters said to me, “It was very entertaining, it needs more substance,” and then, “you asked for feedback, so I wanted to give it to you.” I’ll take it, and since I’m now an East Coaster, directness really works.

I’ll wait to post the slides at the end of the month, so I can work up these ideas a little more.

Thanks again, Dave and University of Washington eMHA students for allowing me to continuously improve my continuous improvement!

Rickerby, J, and J Woodward. “Patients’ experiences and opinions of home blood pressure measurement.” J Hum Hypertens 17, no. 7 (0): 495-503.

Pare, Guy, Mirou Jaana, and Claude Sicotte. “Systematic Review of Home Telemonitoring for Chronic Diseases: The Evidence Base.” J Am Med Inform Assoc 14, no. 3 (May 1, 2007): 269-277

Little, Paul, Jane Barnett, Lucy Barnsley, Jean Marjoram, Alex Fitzgerald-Barron, and David Mant. “Comparison of acceptability of and preferences for different methods of measuring blood pressure in primary care.” BMJ 325, no. 7358 (August 3, 2002): 258-259.

Not pictured: Port, Kristjan, Kairit Palm, and Margus Viigimaa. “Daily usage and efficiency of remote home monitoring in hypertensive patients over a one-year period.” J Telemed Telecare 11, no. suppl_1 (July 1, 2005): 34-36.

There’s a potentially serious gap in the Connectivity for Californians initiative that we are addressing. Here’s a quote that illustrates it:

It is very clear from the interview data that patients have their own ideas, and spend a lot more time thinking about their BP than is apparent in the average 10-min consultation in general practice.

The gap is patient involvement in the design and planning of this initiative, or any healthcare initiative for that matter. Patients have many more ideas about what the problems are to be solved than can be gleaned even from articles like this - the articles simply show that the ideas are out there. Fortunately, we are committing ourselves to have a patient representative involved from the beginning, and that is coming together before any work is started.

The quote above is from the first paper by Rickerby, et. al (click on the images to the right to review any of the papers yourself), which described a qualitative study to look at a small number of patients’ attitudes toward monitoring their own blood pressure, in a practice that routinely recommends this.

The question (#1)

The reason I have reviewed these particular papers is because of the commonly posed question to me over the past several months, in the form of, “Ted, will/are patients really motivated to check their own blood pressure?” with the implication that they are not and they won’t. It’s a fair question that deserves an informed response. Several of the readers on this blog have given me some information from their own lives. These papers add to that knowledge.

The answer (#1)

They are and they will.

The question (#2)

This came up during reading of the papers. Does patient engagement come from having knowledge? Or does knowledge come from being engaged? This came up because patients in the first study who did not have knowledge about why they should monitor their blood pressure or how to do it seemed less engaged.

The answer (#2)

Unclear, with the implication being about whether to work to engage patients with more knowledge or use knowledge as a means test for engagement. I think regardless of the answer, there’s no reason not to provide information to patients. That answer is good enough in this case.

Read on for more conclusions….

Read the rest of this entry »

Personal Health Record PHR Advisory Task Force - CCHIT Certification Commission for Healthcare Information Technology

Minutes from the first two meetings are also on this page. I believe the discussion regarding patient involvement happened after these meetings happened (at least, it is not in the minutes posted)

Design Thinking, Tim Brown, Harvard Business Review, June, 2008

Rachel Block, the Executive Director of the New York eHealth Collaborative (NYeC - pronounced “nice” - get it?) alerted me to this article in the June, 2008 issue of the Harvard Business Review. It’s available for free on their Web site now, so waste no time in getting it.

The article is written by the CEO and President of IDEO, Inc., and talks about several projects that created value for customers using design thinking. The first project described is one at Kaiser Permanente, where, through this approach, nurses changed their rounding strategy to “at the patient’s bedside” instead of “at the nurse’s station.” This in and of itself was striking to me, because it’s exactly the approach that other national leaders in patient and family centered care are pursuing. How great that the same conclusion was reached about where nurses can best serve patients.

Beyond the great health care example, there are other examples that demonstrate the same thing:

Many of the world’s most successful brands create breakthrough ideas that are inspired by a deep understanding of consumers’ lives and use the principles of design to innovate and build value.

As Diana Forsythe discussed in her article on creating a patient education system for migraine sufferers, the most valuable innovations are the ones that understand the lives of the people they will touch, and then support those lives with the product/service/technology to make things better, rather than the other way around. To me, understanding the lives of the people that innovations touch means going to where those lives’ experience happen, and bringing the people who feel the impact into the design of the innovation.

I happen to have been to the Kaiser Permanente Garfield Innovation Center in Oakland, California (here’s a post about it and a little about its namesake, Sidney Garfield, MD), where we received a demonstration of the IDEO process underway on a project in one of the Kaiser Permanente Hospitals. I brought my most critical LEAN goggles with me to assess the process for respect for patients and those who serve them, and I was very favorably impressed. The Garfield Center is an impressive place in general, if you look at the photos in the post, or get a chance to visit yourself.

The theme of patient (and community) involvement in the design and leadership of systems has been on my mind in the next phase of work I am doing, hence these posts. I am glad that there are people like Rachel who know me well enough to add the right fuel to the fire….Enjoy the article and please post your thoughts on what it means for what you do.

…of all those who aspire to develop online systems for patients. - Chapter 2 - e-Patients

It’s not a norm (yet) in medicine to involve patients in the process of care or in improvement of the system. What that means for me and others like me is that we’re going to get lots of “why?” questions about this in everything we do. Most (let’s say, all) of them are going to be intelligent, rational ones, from people who want to improve our health system.

Some of the questions are coming from myself to myself, most recently in the context of the project I am developing with California Healthcare Foundation. I think it’s really important to involve a person (patient, employee, participant) in designing the work, and that I should observe them managing their condition in their native environment (in this case high blood pressure). I recently had to remind myself, “I just gave a presentation on 5 1/2 reasons why patients and families should be involved in their care. I know why.”

Well-timed support from colleagues helps too - enter Susannah Fox, one of my favorite patient empowerment observers and informers, who referred me to this article by Diana Forsythe about a migraine headache patient education software system that was designed by physicians, programmers, and ethnographers, to empower patients with headaches.

If you don’t have access to the article through your institution or purchase it from the link above, there’s a brief summary of it in Chapter 2 of e-patients. In her journey, Ms. Forsythe discovers that a planned intervention to empower patients has the strong potential to disempower them, by connecting patients to information “needs” developed by physicians and programmers only, and not needs stated by others involved in care, including the patients themselves, nurses, and other caregivers.

I added this to what I was asked/told at the Health 2.0 conference in San Diego in March : “Why are current applications only about one to one relationships - patient to doctor?” and realize that’s the “why?” that’s really important. Since it’s a reality that people are as likely to trust someone “just like me” as much (if not more than) their doctor, both have to be brought into the picture. Which means both need to be involved in designing the system.

On the topic of computer programmers, it might be tempting to interpret the story in the article as evidence that software engineers cannot express their coding (or other) creativity and need to be handed specific things to code. What I’ve seen in my own work is that the opposite is more effective - bringing more of the specialized team members into the patient experience is better rather than more shielding from it.

There’s an important clue about this - it’s noticed that several project team members have significant experience with migraines as patients but do not bring these experiences into their professional roles on the project.

Everyone has something meaningful to contribute if they understand (and observe) the customer’s experience, and it’s the role of project leaders to create an environment where this happens.

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.