Casalino LP, Dunham D, Chin MH, Bielang R, Kistner EO, Karrison TG, Ong MK, Sarkar U, McLaughlin MA, Meltzer DO. Frequency of Failure to Inform Patients of Clinically Significant Outpatient Test Results [Internet]. Arch Intern Med. 2009 Jun 22;169(12):1123-1129.[cited 2009 Jun 26 ]

This is a wonderful and well-timed study that has significant implications in the era of the Electronic Health Record and the Personal Health Record. As well done as it was, I would have loved a section of inquiry to be added about “the impact of patient and family access on test result notification.” Read on…

It’s impressive that in 2009, believe it or not, there really aren’t firmly established processes for handling information about test results. A lot of what is done today is bred from custom, such as the infamous “no news is good news,” which the authors found was the protocol in 8 out of 19 medical practices studied. Everyone who likes this approach to test result notification, please raise your hand….

With that background the study team started at a very low baseline, thinking about what kinds of test results patients should be informed about, in what period of time they should be informed about them, and then analyzed medical records (5305 in all) to see if theoretical best practices were carried out., and about 7.1% of the time, on average (up to 26.2% in one Academic Medical Center practice), information to patients was not furnished about their abnormal test results. We can imagine what that might mean in a practice whose policy is “no news is good news.”

The authors looked at the impact of having an electronic medical record and found that practices with a “full” electronic medical record were no more likely to have gaps than one without IF they had a good process for managing test results. So, process and workflow trumps technology in this case.


What’s missing in good process?

So, the number of abnormal test results in this study not communicated to patients is alarmingly high. At the same time, I immediately drifted to what’s missing in the process. The authors listed these steps as a good way to manage test results:

1. All results are routed to the responsible physician
2. The physician signs off on all results
3. The practice informs patients of all results, normal and abnormal, at least in general terms
4. The practice documents that the patient has been informed
5. Patients are told to call after a certain time interval if they have not been notified of their results.

Maybe this is good practice today, but what do our patients and families want in the era of the personal health record and full transparency (73 cents style)? How about this:

Good process for managing test results, patients and families at the center

1. All results are routed to the responsible physician and the patient and their proxies, if specified, at the same time
2. The physician and the patient and their proxies, if specified, sign off on all results (in a current PHR installation, this might mean verification that the patient has viewed the result…read on)
3. The practice informs patients and their proxies, if specified, of the meaning of all results, with specific recommendations to be made based on the information
4. The practice documents the shared decision made by the responsible physician and the patient based on the information obtained from results
5. Without 1-4 above, the practice reaches out to the patient via the most appropriate means (letter, telephone, secure e-mail) to achieve notification and shared decision-making.

If we think about it – in the era of the personal health record, do we really want to tell patients if they haven’t heard something within a certain time interval, they should call us?

Do we really want to continue a “no news is good news” policy, at the risk of “no news” meaning 7.1% of the time someone may be hurt in the process of care?

I think it’s important to remember that the ultimate reason a test of any kind is ordered in health care is for one reason – “to reduce uncertainty.”

It would be great in a future study to analyze the impact of patients having access to their test results in real-time or near-real time, to see what the rate of failure is, and also dig deeper, at the rate of understanding of what test results mean. This is the sweet spot for physicians and nurses, who excel at using test results to reduce uncertainty in the context of a patient’s overall health.

In terms of whether or not the new/improved “Good process” is more time intensive or not than the regular “Good Process,” I don’t think it is more time intensive. I think this is a great item for discussion in the comments. Let’s talk about the cost-benefit of doing things differently.

It’s worth noting that in the first quarter of 2009 alone, 5,078,442 test results were viewed by Kaiser Permanente patients and/o their proxy individuals on KP’s My Health Manager personal health record. In many of those instances, the test results were delivered to the patient at the same time as the physician. That’s a lot of experience both to tap into, and to understand that the old process is already changed forever for lots of Americans and the teams who care for them.

With thanks to the authors for a timely and useful investigation into an area of health care where we all want to improve.

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.

While speaking at the Institute for the Future’s Health Horizons’ Spring 2009 Conference (LiveTweets here and more organized here) about Combinatorial Innovation, with William Ruh, Vice President, Cisco Systems, Larry Tessler, from 23andMe, and Mike Liebhold, Senior Researcher from IFTF, I had a great opportunity to have my words documented graphically, by a very talented visual recording artist.

You could look at the product and get a sense of what I was speaking about on behalf of Kaiser Permanente – member/patient as the hub of health care, engaged doctors with their patients, moving ahead together in the interest of those they serve.

Seeing the documentation is also a great check on accuracy – and in fact, it showed an error in my discussion – the “$5 billion Project” attributed to Kaiser Permanente HealthConnect is actually $4.2 billion, which is a big difference in discussing the investment of a non-profit health system in leading edge technology.

I think (and thought) this was a great opportunity. How can a person tell what the audience feels after they tell a story about something like patient empowerment using technology? Extrapolating to the patient-physician encounter, how does a patient know if their physician understood the significance of their story? Seeing the documentation is very powerful, and a visual check on creating the right impression of the work is very innovative, in my opinion.

Thanks a ton to Institute for the Future for hosting a great discussion, and for allowing me to touch base again wtih two of my favorite leaders in the universe, Karl Hoover and Diana Elser, both from Group Health Cooperative, and as of the date of this discussion, now on Twitter (Follow them here: @kmhoover @dlelser and please encourage them to share their experience in this medium…) Welcome aboard!

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 am here in Grand Rapids Michigan, for the in person meeting of the Innovation Learning Network , which:

The Innovation Learning Network (ILN) brings together the most innovative healthcare organizations in the country to share the joys and pains of innovation. Its purpose is to foster discussion on the methods and application of innovation/diffusion, ignite the transfer of ideas, and provide opportunities for inter-organizational collaboration.

The list of organizational members is on the home page. This meeting is being held at / hosted by Steelcase , the office furniture manufacturer. I was excited to come to this one (and I was not disappointed), because I have heard about Steelcase’s work in innovation, and when I went to go visit the Institute for Family Health in October, 2007 Neil Calman, MD, told me then about the Nurture product family. I’ve been intrigued since then….

The team managing the ILN have been very open and receptive to new communication modalities (of course), so have encouraged live tweeting of the event, which you can access here. As was done at the Health 2.0 Conference, they projected the live tweets in the room on the wall. This feature will probably be embedded in a lot of conferences to come.

On day 1, we went through a gallery of innovations prepared by members of the network, and got a brief introduction to the Nurture line and the philosophy behind it.

I was especially delighted to sit in the prototype “consultation room,” complete with electronic health record mockup, that demonstrates that through research, the Nurture team, in collaboration with the Mayo Clinic, found that optimal placement was with the patient and the physician sitting next to each other. The philosophy is reflected throughout other parts of the line (discussion tomorrow).

The other interesting thing that has been done is a randomized control trial, comparing ambulatory consultations performed in a room like this (pictured below), to a traditionally situated room, with a corner desk and computer in between doctor and patient. Finally, evidence based design in the era of Health Information Technology…..

I would like to start, rather than end this post, with huge thank you’s to:

Allan Rogers, MD, Kaiser Permanente’s National HealthConnect Team
Susan Campbell-Hartzell, Kaiser Permanente Internet Services Group

Without their help, Kaiser Permanente would not have been able to demonstrate kp.org, I’ll explain why.

We got the call (or rather, e-mail) a week before the Health 2.0 meets Information Therapy Conference in Boston, the premier event for the health care startup community (and which Kaiser Permanente is a Flagship Sponsor of): Would Kaiser Permanente be able to demonstrate KP HealthConnect and kp.org, connected to live servers, to this room of 450 health care patients, companies, and other leaders?

Piece of cake, we said. Except for the live server part. Even though this was the requirement of demonstrations at Health 2.0, we would not be able to do things this way, but it was still a lot of work, I’d like to assure everyone!

We only had a week to put together an integrated demonstration. A demonstration that was to last no longer than 3.5 minutes.

Now, I definitely believe that if you can demonstrate something in 10 minutes, you can do it in 3; the challenge is deciding what not to show in a health system that is so comprehensive in the way it does everything, not just health information technology. We also wanted to make this relevant next to really great work completed by Google Health and HelloHealth.

With several script revisions, test system password resets, and stocking of fictional patient records in a fictional system (i.e. one totally separate from the system patients, doctors, and nurses use every day), we created a few weeks in the life of Janet HealthConnect.

What we thought was best was to think about the things that Kaiser Permanente brings to Health Information Technology that complements Google, HelloHealth, and the entire Health 2.0 community. One of the biggest things that Kaiser Permanente brings is adoption – it’s good at this and it wants to share its expertise.

If Kaiser Permanente is demonstrating the future of health care in its medical centers, hospitals, and where its members live, work, and play today, this community is demonstrating the future of the future, and that’s why we need each other.

With that in mind, I asked Anna-Lisa Silvestre, VP of Online Services to serve as her letter turner. Kate Christensen, MD, the Medical Director of kp.org, was also close by as well. In the demonstration I prompted Anna-Lisa for several facts about the adoption of My Health Manager.

• When Janet logged in to My Health Manager, Anna-Lisa told the audience that 47,348,917 other visitors had logged in in 2008
• When Janet sent a secure e-mail to her personal physician, Dr. Rogers, Anna-Lisa told the audience that 6,078,838 other e-mails were also sent in 2008
• When Janet reviewed her HbA1c result, Anna-Lisa told the audience that 16,773,273 other results had been reviewed by patients online in 2008
• When Janet accessed the Health Encyclopedia to learn more about the HbA1c test, Anna-Lisa told the audience that 3,975,230 other visitors had in 2008
• When Janet booked an appointment online with Dr. Rogers, Anna-Lisa told the audience that 1,403,870 other appointments were booked online in 2008, and that these appointments were more likely to be kept.

We then joined Janet HealthConnect’s physician, Allan Rogers, MD, opening Janet’s incoming e-mail. This was a great place to point out that Kaiser Permanente’s maturity with a comprehensive electronic health record has created a focus less on optimizing the acute care visit in the EHR, more on the In Basket as a central place for multispecialty care coordination.

Dr. Rogers then demontrated some of the efficiencies created by the KP HealthConnect team which allowed him to review the patient’s care snapshot right in the In Basket, and then to respond to Janet’s message with full decision support available.

In this portion of the demonstration we showed capabilities beyond sending messages – messaging is designed as an activity that promotes the personal physician-patient relationship with the right information in every encounter.

We quickly stepped through the in person visit, ending with the After Visit Summary, which we used to demonstrate the commitment to service quality, in that AVS use is measured and tracked to ensure a great experience with every encounter.

I closed the demonstration with a screen shot of a patient list, which showed that there may be many Janet HealthConnects, or populations of patients with chronic illness, that can be monitored as a group and cared for by teams, right within KP HealthConnect.

Our final slide is the one pictured above, where Anna-Lisa made the announcement to the audience that My Health Manager adoption has surpassed 3 million members.

So the the things we wanted to show that health information technology can and should do (and has done at Kaiser Permanente) are:

• Keeping people and populations healthy
• Supporting the personal physician relationship
• Connecting the personal physician relationship with strong multispecialty/allied health relationships
• Adoption: showing that patients want and enjoy these services, regardless of age, income, or education level

With special thanks to the Health2.0 meets Information Therapy team for their support and to the entire Health2.0 community for being supportive, and critical. This is where innovation comes from!

I am back from the spring Health 2.0 Conference in Boston, MA, this time combined with Information Therapy, which in my opinion was both a great thing to do in terms of participants, and in terms of bridging the Health 1.0 and Health 2.0 worlds.

Photos below, click on any to enlarge

Some of my favorite health care leaders were in attendance of course, including Holly Potter, Kate Christensen, MD, Paulanne Balch, MD, Anna-Lisa Silvestre, Diane Gage Lofgren, James Hereford, ePatientDave, Trisha Torrey, Susannah Fox, Gilles Frydman, Dan Hoch, MD, Alan Greene, MD, Danny Sands, MD, Jay Parkinson, MD, Jane Sarashohn-Kahn, Lygeia Riccardi, as well was excellent co-hosts Matthew and Indu from Health 2.0, and Josh Seidman, from The Center for Information Therapy.

(Is this dangerous? Attempting to list all of your favorite people on a blog post? I suppose I could just link to my Twitter friends list – I hope everyone remembers what I said on stage about loving everyone and that you’ll add a comment if I’ve forgotten..)

My bias in coming to Health 2.0 is to look for connections and innovations for the established health care system, and I think the combination here supported that, beginning with a debate entitled, “Ix and Health 2.0 – Synergies and Tensions?” moderated by Jane Sarasohn-Kahn, probably one of the few humans alive who can moderate this many energetic people at once. Regardless of the outcome, though, the mere fact of the conversation is evidence that we all need each other, because when we are patients, we are going to need everything we can get to help us be successful.

The Patient Takes Center Stage, from the balcony

The moment of most impact for me was when I was on stage, following a short demonstration of

kp.org (see tomorrow’s post), when the topic of ePatientDave’s work with Google Health and Beth Israel Deaconness (well represented by Roni Zieger, MD, and John Halamka, MD) was mentioned ( start here if you want to get up to speed on this great story ) .

Here’s what happened : When the topic was first brought up, and there were a few audio problems, we heard “Speak up!” coming from the balcony on the right. I turned to fellow panelist and said, “Voice of the patient!” Next, as the discussion was unfolding, with Roni and John describing what they had done in partnership with Dave, I noticed this tweet on the monitor in front of me: “@epatientdave should be on stage too #health2con“.

As Dave got up, in the balcony, to begin talking about his experience, I reflected on the tweet and motioned him to come down, but instead, a really interesting thing happened. Dave stayed up on the balcony, microphone in hand, and spoke to the entire audience below. It was a perfect moment at a perfect time for me (and I think for the rest of the room), when a room of health care leaders looked up to our patients, physically as well as emotionally. I don’t know if there’s a photograph out there of this scene, but it’s gotta be priceless. Even though I could not find one for this post, I like this description of things from Susan Carr.

• Three Million People Now Using Kaiser Permanente’s Personal Health Record | Kaiser Permanente News Center – The title says it all….

• Dr. Ted (he’s not me) | The Economist – Comment from a user of The Economist.com that refers to the Kaiser Permanente study showing a 21.5 % decrease in office visits in Hawaii. (see http://content.healthaffairs.org/cgi/content/abstract/28/2/323 ). I agree that the majority of care to Americans is provided in small practices, as well as the idea that physicians who want to perform virtual care find it difficult with today's reimbursement approach. (50% of the reason I’m posting this is to clarify that I’m not this Dr. Ted. I post comments on others’ blogs as “Ted Eytan.”

Janet HealthConnect’s non-live HTML based login screen

Janet HealthConnect is not a real person – she’s a manufactured patient that exists in a test version of Kaiser Permanente’s HealthConnect electronic health record. She’s coming with myself and Anna-Lisa Silvestre, Vice President of Online Services for Kaiser Permanente to demonstrate the integration between personal health record, electronic health record, and health care delivery at the “Health 2.0 Meets Ix” conference in Boston, next week.

Myself and colleagues at Kaiser Permanente are putting together a live demo of the systems with a twist – nothing is going to be live.

Janet’s My Health Manager on kp.org experience is going to be demonstrated using a series of HTML pages that have been saved from a running instance of a test version kp.org and manipulated by hand.

Janet’s doctor’s experience using the KP HealthConnect electronic health record is going to be demonstrated using a screen movie, filmed from a running instance of a test version of the electronic health record.

It used to be that “nothing substituted for live” in the area of information technology demonstrations; now, however we’ve come full circle.

Why?

• Protection of members’ information – Because KP HealthConnect is fully operational across the nation, no connections to the production system can be made outside of the places where they need to be made – to support delivery of care. This is the only reason to connect to the production system.
• Integrated care delivery is impressive, and complex – Kaiser Permanente’s strength as a system, its ability to coordinate health care across clinical specialties, time, and space, makes it nearly impossible to create a functional test “sandbox” that is working for every purpose, every time, the same way its production systems are tuned. Test systems may not be powered to function at the speed of production system, or may not be linked to a test copy of every system used to integrate care. There is never a question about where the power of systems should be directed – it is to taking care of members.
• The goal is to demonstrate what a functional system does for patients, not the speed of an internet connection in a conference room – We have all seen demonstrations where the message was lost on the audience due to unforseen technical problems. It’s inappropriate to use a hotel’s internet connection to simulate the approach to connectivity that exists in a modern medical office. Very different purposes.
• Live demo doesn’t differentiate “hype” from “reality” in this case – As I’ve shown on this blog and in 421 medical offices across the United States, live systems are supporting members every day. My Health Manager just surpassed 2.9 million active users across the United States, to boot.

It has taken even me some time to recognize (with the help of colleagues at KP – thank you!) that the benefit of doing things live for an external audience brings unacceptable costs.

All of this said, even a scripted demonstration based on live systems is going to have some plot holes, like why wasn’t a certain lab done for a certain indication on this patient? For those of you in attendance next week, feel free to let me know which ones you spot…