“If you don’t like the news, go out and make some of your own” - this was the theme of the presentations given by safety net organizations who are innovating by providing patient online access to their personal health information. It’s now possible to talk to safety net providers who have the technology and the skill to provide this type of access for their communities. This is great news.

Hilary Worthen, MD, visited us in person in Oakland, when we had this discussion , to describe Harvard-Affiliated Cambridge Health Alliance’s patient portal. CHA is using the MyChart patient access system, produced by Epic Systems, Inc. Here are his slides. Comments welcome.

I am attaching the opening remarks that I made, alongside Veenu Aulakh, at the Patient Online Access in the Safety Net discussion, hosted by the California Healthcare Foundation. It describes the “why?” in the context of my journey of discovery. Click on any image to see full size, and comments are welcome.

Update: Incidentally, depending on the reviewer, I am either congratulated or questioned about my presentation style. I just ran across this very nice slideshare : Death by Powerpoint . See if the slides below are more similar to that ideal (I hope they are)

I admit, that maybe, once or twice in my past, I may have used convening and convener in less than flattering terms, much like I used to use “process” in unflattering terms. I learned through LEAN, though, that process isn’t bad, bad process is bad. And so I have learned the same thing about convening, now that I have done it a couple times this summer, with the California Healthcare Foundation.

The most recent time was yesterday, when Veenu Aulakh, MPH, and I brought together Safety Net health care organizations, and national experts in patient online access and social impact of the Internet to talk about (you can guess…) “Patient Online Access in the Safety Net.”

These being the first convenings I have co-led, rather than participated in, I have learned a ton, and have gotten a good understanding of doing this for a purpose, which both situations have had. In the event we hosted yesterday, in Oakland, I put together an A3 document before we invited anyone, which included the background, the goals, and most importantly, the “why?” we were doing this in the first place. It was really helpful to have created agreement around the “why?” - I referred to this many times in the planning.

At the event itself, I got a new perspective that I had not had as a participant previously. It was one of listener/observer - even when I was doing the talking, I was interested to see reactions and learn what people and organizations are capable of. It made me think that when I have been a participant in convenings in the past, this is what my hosts were doing - learning what myself or my organization was capable of doing to solve a problem, as much as they might have tapped me as an expert. Interesting to have this happening in my brain.

Sharing information happened, too, courtesy of some of the most innovative organizations in the U.S., including Cambridge Health Alliance, University of California, San Francisco’s Positive Health Program , New York’s Primary Care Information Project, Institute for Family Health, and Kaiser Permanente.

In addition to all of this, there were a few nice moments of recognition for people’s work, such as when Jim Kahn, MD, thanked Kate Christensen, MD, and her team at Kaiser Permanente for their support and assistance in the launch of the myHERO patient portal for HIV patients cared for at San Francisco General Hospital.

…and a little something for me, a follow-up conversation with Hilary Worthen, MD, from Cambridge Health Alliance, about his study and pathway to discover and implement LEAN in primary care at CHA. He told me that for him, this is a transition from thinking about exam rooms and staff to “work that you need to get done, defined by doctor and patient.” I love hearing about how people apply their creativity and copy the thinking of LEAN to do exceptional things for their patients.

This being the second time I have done this, I don’t know if it was perfect. We tried a lot of things I’ve not done in meetings before, and I am still working to integrate social media before, during, and after. I am definitely sold on my philosophy of supporting any and all technology use (”if you need or want to use your device, use it”) - I have not, in my conveningness, come around to the “turn your devices off” philosophy, as I have written about previously.

Oh, and I learned that a 60″ table seats 8 people.

Here are a few images from yesterday. I’ll follow up with my slides in a separate post. Click on any to see larger size.

This is third of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension. A diagnosis has been made, and our patient is following up to see if the therapy is working or if adjustments need to be made.

Click on the image to see it larger size

Patient Story (Frydman)

I was supposed to go back but I didn’t do it. During a business trip I did try checking my BP with a home tool a few times and every time the BP was well within the norms, helping me be even more in denial. But then the next time I went to my friend’s office the data still showed clear HBP. Go figure!

(On the use of home monitors)It was first a few times on a specific day. Then a couple of times the next day. I then thought I would buy an OMRON blood pressure monitor. But I conveniently forgot about it when I returned to my home. No he (my doctor) didn’t say a thing about it. His behavior made me believe that he was not supportive of the home monitoring.

Clinical and Public Health pearls (Houston-Miller)

• Many patients already self-monitor (55 %, do it, 64 % own a monitor) - many have not been trained how to monitor correctly, and may over monitor; the most accurate way to monitor is twice per day, once in the morning, once in the evening, for 7 days. Patients should not monitor during the day and should not monitor while at work. These measures have not been shown to correlate with future organ damage as well as the morning and evening measures.
• The estimates of “masked hypertension,” or high blood pressure that appears normal in the doctor’s office are probably much greater than the 10 % reported; many patients restart medications in advance of coming to see their physicians (”similar to flossing your teeth a week before the dentist appointment”).

Comment

Where is the data? As in previous encounters, the data is again localized away from the patient and with the provider and ancillary services. Patients are asked to come back (physically) to the physician office to have their blood pressure rechecked and evaluated. The result is that the patient must ask for their blood pressure data from their provider, not the other way around.

What’s missing? If patients do not return in person (where their provider can bill for an office visit), there is no workflow in place in the majority of healthcare to assess blood pressure control, so these patients often go undertreated or untreated. Although 47 % of physicians recommend home-monitoring, many do not know recommendations for appropriate monitoring, including calibration of monitors, monitoring technique, and counseling on the value of home monitoring.

There is also a missed opportunity to leverage social networking, for connections to patients who may have recently been diagnoses and are integrating monitoring and treatment into their daily lives, similar to what occurs at the PatientsLIkeMe Community. Current data shows that there is a significant risk of being untreated or undertreated (4 - 11 times) among patients who have not seen a doctor in the past year. It’s as possible that these data are confounded by the fact that for most patients, management of the condition is stipulated by the care system to be an office-based activity.

Next post, a slight switching of gears to the annual health plan/employer interaction. Comments welcomed, of course

• Getting What We Pay For: Innovations Lacking in Provider Payment Reform for Chronic Disease Care - From the Center for Studying Health System Change. Asking the obvious question (in a useful way) about how payment per service is helpful to patients with chronic illness

I am posting this presentation that I created, commissioned by the California Healthcare Foundation, and supported by the Center for Information Therapy and indirectly, Group Health Cooperative.

It is the presentation that created the need for me to define Health 2.0. It is also the last presentation I will give as as a Group Health employee, and the only time I will be able to give it, due to my my career change.

It’s in slide show format, so feel free to click on any of the images and page through. I had a lot of fun putting it together because it allowed me to reflect on what I learned and how much I have changed in my thinking in just the past year. May the same trend continue.

I would like to extend special thanks to Crosskeys Media, producers of the excellent show “Remaking of American Medicine,” for allowing me to use portions of the content in the interest of supporting patient centered care. I encourage anyone interested in this topic to view or purchase the show. There is an educational license available that allows for use in teaching (as a whole piece, not intended for editing by users). It’s worth it.

Feedback and comments welcomed.

As chief blogger for Project Health Design and colleague Lygeia Riccardi notes in her post, Project Health Design Blog: The PHR as a mirror of daily life, project teams for this initiative to inform the next generation of personal health records was in Washington, DC, this week to work with policy makers and collaborate across teams, and I was invited along with Lygeia to meet the teams on one of their first nights here, at a reception.

I was epecially happy to catch up with colleague James Ralston, MD, MPH, from Group Health Cooperative’s Center for Health Studies, who is leading one of the teams, and of course, one of my first questions to him was, “how have you involved patients in this work?” His answer was a great one: “Well, Ted, I’ve brought a patient with me.”

As you can see from Lygeia’s post, there was a patient (participant was the term she used) from another team as well. Both are supported by the Robert Wood Johnson Foundation in attending and improving the efforts of these teams. Kudos.

• Patient Centered health care meets enormous resistance | ZDNet Healthcare | ZDNet.com - Commentary on the report that Josh Seidman and I co-Authored. I was a little shocked by the glass-half-empty title, but I might be tempted to agree with the last sentence. There are huge opportunities to make this happen, and we now know what they are. So let’s do it.

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

When in California last week, I went to visit Larry Leisure, President, North America, and Deryk Van Brunt, DrPH, Senior VP of Business Development for iMetrikus.

images: click on any to see larger size

iMetrikus is part of the Continua Alliance, and has expertise in collecting and processing patient derived biometric data using FDA-cleared gateways, and in presenting the data to support clinical workflow. Here are a few images of the devices. The MetrikLink device connects many different devices via a phone line or PC, but it is not required if the device has standard connectors. There is also a mobile platform, especially interesting for patients who may rely on a cell phone for Internet connectivity.