I was honored (truly) to represent The Permanente Federation as a guest last week at a summit held by Veterans Health Administration Primary Care in Washington, DC, to review work done to date inside and outside of VHA, for the purpose of continuing to provide the best overall care for our veterans.

The summit included a review of the latest efforts of the Patient Centered Medical Home, given personally by Paul Grundy, MD, from IBM, and Michael Barr, MD, from the American College of Physicians, as well as information given by VHA experts in primary care leadership operations, quality, and across disciplines, including physicians and nurses.

The day and a half-summit included a healthy (in my opinion) amount of introspection that included the best results for our veterans, as well as areas for improvement. As I expected, this group of nursing and physician leaders are incredibly bright and committed to understanding the strengths and weakness of the system they support, to a humbling degree.

This is impressive to see in a system (VHA) that is regarded by many in health care as an example to others as what world class health care should be, and at the same time what I am familiar with in systems like this – an ongoing, healthy dissatisfaction with the status quo.

What I could also relate to in my role is the serious interest, especially in a highly-regarded system, in making sure that primary care is all that it can be, not just in medical offices but wherever patients/people/veterans live, work, and play (and I learned about the existence of the care coordination services – telehealth program). And, as at Kaiser Permanente, the VHA has a commitment to a robust internet portal for veterans, MyHealtheVet. I think the era of the personal health record is a great one for primary care, and vice versa.

In terms of connection to the patient centered medical home, I really liked how this concept was used not so much as a bar to reach, but as a guide and stimulus to create a whole new bar. Systems like VHA and Kaiser Permanente by virtue of their emphases on whole-body, total care, may be more likely to experience challenges faced by primary care across our profession(s) (nursing and medicine) sooner than the rest of health care and therefore be faced with the urgency of solving those challenges sooner as well. Both systems also support multi-specialty care, so there’s good understanding that great specialty care goes hand in hand with great primary care – both are necessary.

My hope is that the solutions they create for veterans will support strong primary care for all Americans, and I am confident that they will. Thanks to the primary care leadership, physicians and nurses alike, for allowing me to observe their work on behalf of our veterans.

A little while ago, I wrote about the experience of a patient, Fred Holliday, whose wife Regina Holliday stimulated a discussion about patient access to recorded health information. Fred Holliday died on June 17, 2009 .

On June 16, 2009, the HIT Policy Committee produced its first recommendations of what Meaningful Use should be. I of course am looking at the proposal from the perspective of patient and family involvement in care, and I think in many ways it is impressive.

It’s useful to think about the HIT Policy Committee recommendation in the context of what the law as written says, which is as follows (page 355-356):

‘(2) MEANINGFUL EHR USER.— ‘‘(A) IN GENERAL.—For purposes of paragraph (1), an eligible professional shall be treated as a meaningful EHR user for an EHR reporting period for a payment year (or, for purposes of subsection (a)(7), for an EHR reporting period under such subsection for a year) if each of the following requirements is met: ‘‘(i) MEANINGFUL USE OF CERTIFIED EHR TECHNOLOGY.—The eligible professional demonstrates to the satisfaction of the Secretary, in accordance with subparagraph (C)(i), that during such period the profes- sional is using certified EHR technology in a meaning- ful manner, which shall include the use of electronic prescribing as determined to be appropriate by the Secretary. ‘‘(ii) INFORMATIONEXCHANGE.—The eligible profes- sional demonstrates to the satisfaction of the Secretary, in accordance with subparagraph (C)(i), that during such period such certified EHR technology is connected in a manner that provides, in accordance with law and standards applicable to the exchange of information, for the electronic exchange of health information to improve the quality of health care, such as pro- moting care coordination. ‘‘(iii) REPORTING ON MEASURES USINGE HR.—Subject to subparagraph (B)(ii) and using such certified EHR technology, the eligible professional submits information for such period, in a form and manner specified by the Secretary, on such clinical quality measures and such other measures as selected by the Secretary under subparagraph (B)(i).

That’s the complete definition in the law.

With that in mind, the thinking of the HIT Policy Committee is inclusive of a policy priority they call “Engage patients and families,” with a fairly reasonable (based on what I know the technology can do) set of objectives and measures for 2011-2015. The way I interpret the thinking in this set, it is that in 2011, patients will begin to read their records online, in 2013 they will begin to write their records online, including via secure messaging with their providers, and in 2015, there will be full real-time access to a personal health record populated with their data.

The measures in 2011 include the use of an after visit summary, which I’ve written about previously, and is relatively easy to measure (and produce, in my opinion).

I think the measures are a nice compromise between what leading edge health care systems can do today versus where all health care systems should be in the future. I’ll also say that this component of meaningful use is likely to help all of the other components be more successful, because they will cause health care systems and providers to see the impact of what they do, through patient reaction. To the patients out there, what do you think?

I am, in this blog post, asking for leads on two tools that could be useful to me, or organizations engaged in social media. Do you know of any tools, free or other, available to do these things? Feel free to post ideas in the comments.

1. Tool #1: Registry of Twitter/Blog/RSS Feeds : Let’s say that you are a professional group, or maybe a large medical group, and you would like to aggregate all of the RSS feeds generated by your members/employees/people affiliated with your organization on the Internet. This could be their Twitter feed, blog feed, delicious links, even flickr feed. The purpose would be to know who in your organization is out there, to follow along what they are doing, and maybe tap their expertise when needed. Friendfeed used to have an “invisible friend” feature, where you could add an RSS feed that was out there without having the person actually get an account, but that feature appears to be gone from the new version. This particular tool request may be hard to explain the first time, so feel free to ask questions in the comments.
2. Tool #2: Preferred URL registry for individuals: This need comes up on this blog a lot – I decide that I’d like to reference a person who I’ve been working with or had a conversation with. Do I link to their Twitter URL? Blog URL? LinkedIn URL? Company biography URL? Or do they even have one? It would be nice if people had a place to indicate which place they would like people to point to when they are referenced. Maybe the default will be Twitter, but until then, I’d like to be respectful of each person’s preferences.

Thanks for any ideas!

It seems (at least to me) that mHealth is starting to gain a lot of attention. I think part of it is self-derived, based on an article I was quoted in at Health 2.0 meets Information Therapy in April, 2009. The attention grabbing headline is really based on this article, highlighting the work of Kaiser Permanente’s Information Technology group, rather than anything I said, however.

The experience picked up recently, with a visit with the leaders of Voxiva, and yesterday’s mHealthInitiative June Seminar, in Washington, DC. The good news, at a minimum, is that there is a lot of innovation happening in mHealth in this part of the United States.

It probably gets better than that, though, as the possibilities for mHealth become more real. Way back when, when I was working my first patient internet portal project, when someone brought up the idea of any sort of mobile or instant-messaging-type interaction with physicians, it seemed pie in the sky. Now, not so much.

I was first exposed to the work of Voxiva at Health 2.0 in San Francisco, in October, 2008 , and recently got an updated look at what they are working on from Co-Founder Paul Meyer and Carl Kirts, including a new program called Text4Baby that demonstrates the potential of a communication platform to integrate with a very large portion of a population. Paul offered two pieces of advice based on his experience:

1. Don’t fall in love with the technology in this space – “let people use what they want to use” and “think multichannel”
2. Don’t focus on one use case – think more broadly in deployment for flexibility.

I had the good fortune of attending the mHealthInitiative June seminar with one of my favorite thinkers, Jane Sarasohn-Kahn, who came to the seminar, as I did, to learn more perspectives about mobile health. You can get a sense of what we learned from livetweets on the event, compiled by the Healthbirds service.

One of the presentations that caught my attention was the discussionled by Arlene Harris, Founder and Chairwoman of Jitterbug. As it says on their About page:

Jitterbug was created for people who prefer a simple, easy to use cell phone, a friendly, helpful service experience, and affordable plans without monthly contracts.

It seems that Jitterbug has worked to understand the best way to serve customers over 55, and then create the cellular experience to match, for this potentially disadvantaged population. It would be interesting to see how personal health record platforms might interact with an approach like this to broaden management of health to people who may not use the web. Jitterbug is also involved in work on medication adherence, as well as services that connect family members to subscribers’ information.

At the conclusion of the session, President Claudia Tessier discussed the 12 mHealth Application Clusters, which might be useful to people who think about the most promising leverage points for mHealth are.

A lot of this is still very new to me, however, I think the current data (and data coming soon, from the Pew Internet and American Life Project) supports review of the possibilities for patients in every care system to leverage technology to manage their health.

Thanks to Voxiva and experts at mHealthInitiative for the start on the journey….

Coco Kraft and the Village Elders: Medical Facts Mural #1 -

Regina Holliday has unveiled her work at Washington, DC’s Pumpernickels Deli. Image courtesy of Christine Kraft.

I attended a smallish get together yesterday organized by Christine Kraft to think about Health 2.0 / DC in the epicenter type things, where we thought about some of the trends in social media use, social media use by physicians and medical groups (I got a lot of help on this one), journalists, and finally, a real story about a patient’s experience, here in DC, that really brings to light a problem with a meaningful use definition that doesn’t include “and the patients can see the data.”

I’ve been thinking about the idea that meaningful use must include “patients can see everything” since ARRA came out, and see my first mention of it in the Twittersphere around April 22. I have noticed since then that the idea seems to be picking up steam – initially I was told by some that this would be a “distraction” to the conversation. Now I’m sure that it’s not. Read on…

This is the story of Regina Holliday – it’s really worth a read, and I’ll quote some of it here:

We will fight the good fight. Regina’s USA medical advocacy 2009

Why do we have more transparency in special education law then in medical care? Why do we have more access to information on a box of Cheerios then on a medical chart? Why isn’t there a medical counterpart of the Freedom of Information Act? People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.

Regina told us her story in person, accompanied by the notebook of her husband’s medical record, which she was only allowed to get on paper, at $0.73 a page:

What struck us so much was the fact that his all started just a few weeks ago on March 27, 2009. A life threatening diagnosis creates an amazing call to action. As we learned about all the different ways that her husband’s care was potentially impacted by lack of information, our mood became more and more somber.

Regina happens to be an artist, and what she’s doing with her experience is as impressive as the challenge that she and her family is facing. At Washington, DC’s Pumpernickels Deli, she’ll be painting a mural of the Medical Facts of her husbands kidney cancer, patterned after the nutritional facts label.

The installation will be large (6 feet tall), in color, and will be permanent. It may just become a monument to information disparity in health care. Regina told us that the mural may be completed by this week. It will be interesting to see the reaction of the community to the art piece.

In the meantime, I still think it’s worth asking:

1. Is e-prescribing as meaningful as it should be, if patients and families can’t review what’s prescribed and know what they are supposed to be taking?
2. Is interoperability meaningful if it only connects doctors to doctors, hospitals to hospitals, and not patients to their health information?
3. Are quality metrics meaningful if patients do not get to see them and use them to make decisions about how their care is delivered?

Finally, if all of the things that are currently being cited as meaningful use not reviewable by the people whom they matter to most, the patient, what’s the incentive for anyone to make sure they are accurate? Everyone prizes accuracy, and the best organizations in the world know that the way to ensure it is to make sure that people who generate information see the impact of what they do.

It reminds me of this quote:

“The key to the success of Ryanair and other low-cost airlines, lies in the way they think about combining processes. Ryanair’s cabin crews also do the cleaning inside the aircraft, so if they make a bad job of it they have to face complaints from passengers. In more traditional airlines the cleaners never see the passengers.”

- Yves Morieux, Boston Consulting Group

Comments, as always, welcome. As well as a trip to the Pumpernickels Deli….

Patient-Centered Medical Home – What, Why and How? (Blogger Briefing)

Thanks to IBM and one of its most energetic leaders (and I’d say one of the most energetic leaders in health care), Paul Grundy, MD, a team of colleagues at IBM Healthcare and Life Sciences (noted on the last slide), and Laurie Friedman, the social media-savvy Communications professional at IBM who set the briefing up.

I tweeted some of the comments that Paul Grundy, MD, made about the “why” of Patient Centered Medical Home, which provides great framing for this discussion for a new audience (perhaps one that is less health care savvy), and there was a nice exchange of ideas tossed back and forth, from some my other favorite health care leaders, including Brian Klepper and ePatientDave.

I am mostly fascinated by the new ways that organizations and people are working to get ideas out there, and to connect with a wider group of stakeholders than normal (although if you know the work of PCPCC, they are known for being very inclusive to begin with). What would be next? A call with a chat transcript, or is there any other methodology to bring in this audience and put the comments out there for people who are there and aren’t there to learn? I’m not sure current Webinar-type technology fits this bill. In any event, it’s nice to see the information being put out there and the listening that goes along with it. It’s what Web2.0 is all about.

The Health Care Blog: Should Health Care Standards be Open Source?

Is a $100 per license a significant hurdle in the use of open standards? Guest writer Alan Viars fleshes out a conversation he and I had on Twitter recently, related to some thinking about the open sourceness of open standards. Applause to Alan for putting the information out there for public comment and review, in the interest of making health care data easier to move around.

I am back from Grand Rapids, Michigan, site of the 2009 Innovation Learning Network in person meeting, at Steelcase University Learning Center . It’s a beautiful facility and a great place to bring some of our nation’s leading health care organizations and innovation experts together.

I was given the opportunity to attend by Kaiser Permanente to think about the place of innovation and learning about innovation in medical groups, and was not disappointed. I did not leave the meeting with the answer to the question, “how should a medical group (or any group of clinicians) involve innovation in their activities to learn to be better clinicians and deliver excellent care?” I did leave feeling that the question is important to explore, though.

First some specifics:

Our #ILN09 twitterstream shows what we did step by step. On the second day, we were treated to a closer look at the work of the Steelcase Nurture team, from the way they approach their work to the “why?” it is important. Part of this tour included a very enthusiastic look at the products, given to us by Libby Ferin, Director Experience Marketing & Communications.

The thing that I noticed both in Libby’s comments and even in things like which books were selected to be placed in the showroom was an integrated belief in the importance of the role of the patient and family in care. She referred to a prototype hospital room not as a patient room, but as a patient/partner/family room.

In the room itself, note that the patient and family have a view into the electronic health record that is tied to the role of the person in the room (based on a sensor located at the room’s entrance). Every room has spaces for families to engage, in recognition of the fact that “visiting hours” are long-ago concept. The lights over the sink that blink until new visitors wash their hands are a great way for patients and families to be involved in infection control efforts in a soothing way….

Clearly, we were touring a product showroom (and I don’t endorse any third party products or services on this blog, see my about page about conflict interest and independence of financial ties), the essence of my impression is that an organization in an industry outside of health care can be a model for health care organizations in reinforcing the best ways to work with patients and families.

The look at the products was tied to a look at the process, which includes two terms I haven’t heard before, but celebrate: “Evidence Based Design,” and “Participatory Design.” We know there is evidence-based medicine. Now that participatory medicine is becoming a part of health care, it has an analog in another industry, this is good.

As an aside, I really liked the way the Nurture design team presented their process, by printing out the slides and taping them to a board. It’s simple, sets expectations for the audience, and forces a focus on images and feelings rather than words:

What are some specific content things I took away from this meeting?

1. Where is design in the HIT stimulus package? Much like a municipality might have an “arts tax” on public works, I think that a portion of the resource going to place technology in health care should be devoted to supporting the richest environment for its use. This is everything from placement, to lighting, presence or absence of sound (Kristen Juel from Kaiser Permanente hosted a fascinating conversation about the role of music in health care settings).
2. What is the role of innovation/design in the success or failure of personal health care? Amy Tenderich has been a leader in thinking about this for diabetes. What about high blood pressure, an activity that is highly recommended but poorly practiced? We saw a great case study of how the “fridge pack” for soft drinks dramatically increased the consumption of aluminum. What’s the “fridge pack” for home blood pressure monitoring?

And on the deeper question…innovation in health care and among clinician groups: I think there’s a role for both learning about the techniques of innovation and applying them to solve problems in health care, and patients and those who care for them (physicians, nurses, allied health) should be involved, especially those closest to the patient(s) and their families.

I don’t know of organizations outside the Innovation Learning Network supporting exploration of this question and some of the answers, so from this perspective it was a great experience. If any of the readers of this blog know of other organizations stimulating these discussions, please feel free to post that information in the comments, or your answer(s) to the question about how and why medical groups or clinicians should integrate innovation learning and skills into their work.

I’ve decided to give the continuation of this discussion (started here) it’s own post, to freshen it up a bit.

ePatientDave asked:

Long story short – the CCR schema is not freely available ($100) so pts can’t discuss whether Goog should have implemented other Types for Functional Status. They only did Pregnant and Breastfeeding. Some of us wanna know what they other available values are.

David Kibbe wrote us both in e-mail:

Dear Dave and Ted: It’s great to have these questions asked, and important to respond. The Functional Status data object (section) of the CCR standard may include any condition that the user/implementer thinks is related to functional status. Google Health has given as examples pregnancy and breast feeding, with SNOMED codes, but one might also enter “BKA right leg,” or “severe respiratory impairment due to COPD,” with codes for those.

The reason for this: There is no formal vocabulary within the industry or profession for Functional Status, and so the standard doesn’t refer to one. Perhaps there should be, and I think that as people start to use the CCR standard for health data exchanges, it may be one of the things that the industry needs and then creates. The same can be said for the CCR standard’s data object (section) on Advance Directives. While there are some industry conventions for descriptors here, as “do not rescucitate,” and codes may be found for these, there is no universally agreed up set of codes that could be plugged in here that everyone would accept.

Lots and lots of work to do! We’ve laid the path, but we certainly haven’t put in all the sign posts, paved the road with asphalt, or installed traffic signals!

One other comment: The CCR standard is not a formal data model. It could very well become the basis of one. But people think, sometimes, that this is all perfectly arranged and designed, to the point of being a data model. And that would be correct.

Hope this is helpful.

I think that the Participatory Medicine folks should help the CCR standard community to build a CCR Wiki that would move this all along a bit faster. What do you think?

Kind regards, DCK

And a follow-up from David:

Steven and I have also done a number of CCR Training Workshops for programmers and developers, the so-called “deep dive” into the CCR standard. And I’ve started an entry in Medpedia on the CCR standard. http://wiki.medpedia.com/Continuity_of_Care_Record_(CCR)_Standard

As well as one from Steven Waldren, MD:

There is a fair amount of material on http://www.ccrstandard.com about the CCR. I also did a video tutorial that goes over the schema at a high level. It can be found here: http://www.ccrstandard.com/schemaoverview

Thanks to all for their support of this conversation being transparent.

As an aside in my own work with a colleague, we’ve discovered “At this time, Google Health does not support diet and exercise information, nor images such as x-rays.” (From their Third-Party Services Overview).

Clearly we have some more work to do for these standards and the services to use them to capture information that’s as health related as medications or lab tests (see my series of posts on Safeway’s Food PHR, FoodFlex)