Posts Tagged ‘patient voice’

Photo Friday: We are all Patients in the End (Wonderful what can be done with a paintbrush)

March 13th, 2010 | Popularity: 1%
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We Are All Patients in the End

This is for you, Susannah Fox – This week’s photograph is of Regina Holliday and Cindy Throop who helped organize a flash mob in Dupont Circle. Regina’s shown myself and others of the power of the artists’s brush in creating change. I wouldn’t have envisioned this a year ago for health care.

The scene on Tuesday reminded me of another photograph I took a few weeks ago, while at BWI airport. It is of a letter written to Thurgood Marshall in 1954 about his efforts – “It is really wonderful what can be done with these television cameras.” Less than a mile from the spot Regina is standing is where Justice Marshall planned the strategy to overturn school segregation. The building is now called the Thurgood Marshall Center, pictured below.

Voice of the Audience: WHIT 5.0 “Beyond the PHR”

November 10th, 2009 | Popularity: 4%
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WHIT 2009-Beyond the PHR -Audience Comment - 13

We can listen to the thoughts of the audience as much as we listen to the thoughts of the panelists, and you.

At today’s presentation at WHIT 5.0, I asked every audience member to write down something on a note card about what they heard today about using social media to engage patients and change the health care system. They could write a comment, a question, or just “have a nice day,” as long as they wrote something.              

Unfortunately, we ran out of time to go through these with the panel. Fortunately, the conversation can now continue in cyberspace, because the questions are written down.

Take a look. Answer one, or answer them all in the comments.


Presentation (with the patients): Beyond the PHR to engage patients – WHIT 5.0

November 10th, 2009 | Popularity: 3%
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I wrote about moderating this panel previously, and today it happened. Here are my introductory slides, including the very first tweet of each panelist!

I asked every member of the audience to write a question or comment down on a notecard. I’m going to scan those in and allow panelists to answer them online, to continue the conversation.

Here’s where you can find everyone, and thanks for bringing your perspective today:

Holly PotterePatient DaveRegina Holliday

“73 Cents” Mural Dedication, Tonight, Washington, DC

October 20th, 2009 | Popularity: 3%
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Dear Friends,
I just wanted you to know that at 8:15 pm on Tuesday, October 20th (The National Day of Hope and Remembrance) we will be dedicating the mural “73 Cents” in honor of the memory of Fred Holliday. We will meet by the mural in the CVS parking lot at 5001 Connecticut Ave. I am asking everyone to bring either a flashlight or a candle. We plan to light the mural with at least 45 beams of light to represent the estimated 45,000 American people who died last year do to lack of medical access. We will be singing songs from Buffy The Vampire Slayer- The Musical Episode, “Once More, With Feeling.” Fred wrote his dissertation on Buffy and I can think of no better way of remembering him. I have no idea how many people will show up. We could have a small gathering or a flash mob. Please attend if you can. If attending is not an option please tweet or blog about it.
Thank You, Regina


Moderating a Dream Panel at WHIT 5.0

October 19th, 2009 | Popularity: 4%
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The 5th Annual World Health Care Innovation and Technology Congress (WHIT v.5.0)

A few years ago, I was asked to prepare a presentation for leaders with two simple directives: “Ted, no powerpoint slides, and no talking heads, please.”

My response to that was equally simple: “Okay, then you’ll get to listen to the real boss/CEO/Board, the member.” (recall that Group Health Cooperative is member-governed)

Ever since then I have kept trying to include the patient perspective, and noticing that when it’s included, how compelling it is (see this photograph for proof).

Sometimes, I’ve been told, “Ted, a patient wouldn’t be appropriate for this setting.” But I still kept asking….

This time I wasn’t told that, and so I get to bring that perspective in the form of great people. They are Dave deBronkart, Regina Holliday, and Holly Potter.

Our session is in the section entitled “Consumer Connectivity: Engagement Through Social Networking,” and the title of our discussion is, “Beyond the PHR: Promoting participation at all levels: internal and external; patient, family, community.”

Holly is representing the health system perspective, though her work as Vice President of Public Relations and National Stakeholder Management for Kaiser Permanente.

What they have in common, is that they show how sometimes, your life can change, literally overnight, and social media tools are means to teach and learn from people “just like me,” to make a lasting difference.

Beyond the title, I’ve been asked to summarize what this panel will be about, which I’ll do here, with main points:

  • How does a health system foster broader participation after connecting 3.3 million patients online to their health care teams?
  • What are patients’ expectations for participation in health and health care using social media?
  • How are patients and families leveraging social media to participate in reshaping the system itself?

I haven’t yet run these by Holly, Dave, and Regina, they are to help potential attendees know what the session is about, so there may be edits. Or if you have suggestions, post them in the comments, please.

What I see happen when this perspective is brought in is that people in the audience become less afraid/more confident in taking risks to do what they can to help people. That’s what I want to promote.

The dream part is that I engage organizers of a respected event like this to bring these exceptional experiences directly to their audiences. So, thank you WHIT 5.0, I will do my best not to let you down!

Speaking of exceptional experiences. Here is Regina’s. We’re on at 10:55 am, on Day 2, please come and join us.

Disclosure of material connection: I have not received any compensation for writing this content or moderating this panel; I am an employee of one of the organizations represented on the panel (Kaiser Permanente); I am receiving admission to the event sessions as a speaker.

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

June 1st, 2009 | Popularity: 20%
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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.

Regina_medical_facts_mural002

Is it meaningful if patients can’t use it?

May 28th, 2009 | Popularity: 36%
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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:

Regina's Husband's Paper Medical Record

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….

“We Will All be Patients Someday” – Health 2.0 meets Information Therapy, Boston, MA

April 27th, 2009 | Popularity: 27%
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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

Twitter - SusannahFox- @epatientdave should be on ... (20090427)

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.






The New Life of e-Patient Dave: Dr. Dan and I speak at Connected Health

November 25th, 2008 | Popularity: 11%
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The New Life of e-Patient Dave: Dr. Dan and I speak at Connected Health

I watched this, and you should too. I’m just posting the first video – the rest are on Dave’s blog. In the first few minutes, Dave unearths the issue of patient safety – “my radiology report listed me as a 53 year old woman.” Imagine how different health care would be if patients were part of the accuracy/quality loop for every interaction.

Note the all-star cast of audience members asking questions in the last video.

Meeting ePatientDave for the very first time

November 5th, 2008 | Popularity: 13%
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ePatientDave and Ted

I didn’t know when it would happen, and in what city, but it did, today, on a new day for our country, in San Francisco. I met and walked with ePatientDave. I am here to learn more about work underway at Kaiser Permanente and California Healthcare Foundation, Dave is here for the Dreamforce Expo.

In all of the discussions I have had since I’ve been here, including my first time meeting with Dave, I have been most energized whenever the conversation turns to patient involvement. It just clicks for me, and Dave has been visibly telling his story and his desire for a better health system to me and others for almost (more than?) a year.

The story of our customers helps us see our value to them better, and it brings in ideas from other industries. Dave’s expertise is in using Software as as Service (SaaS) in his work, which has lots of potential in health care I.T. He’s already turned me on to a very useful scheduling tool that I use, TimeDriver – those of you who have set up time to talk with me have probably been sent there (it’s easy, no?).

See, our patients want us to deliver quality care and be efficient, just like we want them to be.

Cancer blogs become part of treatment – The Boston Globe

October 27th, 2008 | Popularity: 9%
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  • Cancer blogs become part of treatment – The Boston Globe – While there hasn't been much research done on the relatively recent phenomenon, patients attest to its many benefits. And two Ohio State University researchers, conducting one of the first studies on cancer patient blogs, said their preliminary findings suggest that online journals indeed help.

    "It's definitely not hurting these folks . . . it's a good means to express yourself," said one of the researchers, Jennifer Moreland, who is earning a master's of health communication. "These folks will look back over the last few years and say: 'Look at what I've come through. Hopefully, someone else can read this and survive as well.' "

Photo Friday: Matthew, Indu, and Health 2.0 Wrapup

October 24th, 2008 | Popularity: 26%
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Matthew and Indu

I’ve selected a photograph of Matthew Holt (in the wig and skirt) and Indu Subaiya, MD, performing the lifecycle of a patient in a Heatlh 2.0 world, and the Health 2.0 conference this week, in San Francisco.

As you can see from the remaining photos below, Indu and Matthew had fun with this, and the approach was very effective as people removed themselves from themselves and focused on what these technologies will mean for people throughout life. Here are my remaining photos, click on any to see larger size, and my recap below:

The conference overall was really great and came together very nicely, as a sort of journey, from “what’s being worked on” to “what do we need to do as a society to move into the future.”

In the photos above, you can see Indu and Matthew doing a role play with the various technology companies at Health 2.0, covering everything from genetic science to virtual doctor visits (that’s Roy Schoenberg, MD, from American Well with Matthew on stage).

Josh Lemieux from the Markle Foundation led a panel on privacy issues followed by several technology demonstrations around supporting secure/private access to health information.

I met Joan Osborn and Sheila Subaiya, MD (pictured along with Brian Loew, CEO of Inspire.com) over an ice cream sandwich that I now regret not tasting.

I connected with three pioneers in health information technology to talk about the importance of place and telepresence (complimentary, not in opposition): Trenor Williams, MD, Danny Sands, MD, from Cisco, and Paulanne Balch, MD, from the Colorado Permanente Medical Group.

I got to watch as two pioneers connected, Adam Bosworth from Keas, and Paulanne Balch, MD.

I attended the closing, led by remarks from Alan Greene, MD, David Lansky, PhD, Robert Kolodner, MD , David Kibbe, MD , moderated by Brian Klepper.

A really great thing happened for me when I got to meet the faces and minds behind the Twitterstreams I have been following for the past several months. We’ve become a community; meeting in real life adds that extra layer of respect (Is it GenX of me to get this benefit or do GenY’s get this too?). I think a few really great people also became Twitterized this week…Jane, Patti, Paulanne, Ravi, welcome.

Finally, a curious and exciting thing happened at the very end, with the self-assortment of individuals from the Bos-Wash Megaregion to talk about how we would contribute to the Health 2.0 movement. We think we can and will, as DC realizes its present and future as the epicenter of health care transformation.

Come join us and thanks to Matthew, Indu, the Health 2.0 team, and all of the volunteers and organizations (including flagship sponsor Kaiser Permanente) for making us less afraid of the future.

Now Reading: 25 Percent of Large Medical Groups Use Data from Patients to Improve Care

October 14th, 2008 | Popularity: 34%
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Only 10 percent reported that most of their physicians would strongly agree with statement that the group regularly incorporates feedback from patients in improving care and developing new services.

This is among the largest medical groups, the ones with the greatest infrastructure.

This figure comes from the attached article, published in Health Affairs , which is a survey of a sample of the largest medical groups in the United States (those with 20 or more physicians), with the exclusion of Independent Practice Associations (due to theoretically less infrastructure present), and via self-report of the CEO’s/Presidents/Medical Director. In other words, this is best case.

With regard to online access:

Thirty percent of medical groups use group visits for patients with chronic illnesses at a majority of their practice sites (data not shown). A similar proportion reported that most of their physicians communicate with patients via e-mail “occasionally,” although only 1 percent reported that physicians use e-mail with patients daily. Nine percent said that a majority of their patients could access some part of the group’s EMR online.

Unfortunately, the performance of the medical groups surveyed lessens as the size of the group does. I thought it might be possible that smaller practices in this group might employ greater efforts to incorporate patient feedback. That could still be the case, since groups with less than 20 physicians are not included here (and those are the overwhelming majority of places where Americans receive their ambulatory medical care).

What about measuring “Medical Home-ness”?

Although some argue that “ medical-homeness” is better evaluated from the patient’s perspective than from the physician’s, others balk at all attempts to measure aspects of the PCMH as overly reductionist. Regardless, the demand for clinical practice “ transparency” remains a reality of the current policy environment, and success of the model will depend in part on continued multistakeholder involvement in the development of standardized, comprehensive assessment tools.

How, in a Health 2.0 world, could we combine the significant expertise of NCQA and lighter weight solutions to support patient involvement in the measurement of medical home-ness? Would this approach also guide medical groups to select the right infrastructure improvement projects for themselves and implement them quickly? This fits in nicely with the LEAN concept of “seeing the impact of what you do,” by getting smaller bits of feedback soon, combined with more comprehensive feedback over time.

Maybe a parallel iPhone Medical Home measurement application will surface …. see what you think.

e-patients: New York Times Health Section

October 4th, 2008 | Popularity: 15%
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e-patients: New York Times Health Section

Read the comments and watch how patients lean and teach each other about how they can thrive in our health care system, and how we can perform better for them. This is a revolution.

I’m not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn’t be privy to our medical data, much less the chance that we might have something to contribute. But we do.

e-patients: Safety Net Populations

September 19th, 2008 | Popularity: 30%
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e-patients: Safety Net Populations

The nice thing about the blogosphere is that when you get behind in your blogging, someone else will help you out. Thanks to Susannah Fox for writing about her experience with us in Oakland, California, around the sharing of Pew Research Data with safety net health care organizations.

The comments on the post are especially heartening, in that they support that involving the audience in the presentation of information is meaningful. In this case, they presented just as much information back, which is as it should be.

If I can have one claim to fame in the convening world, besides audience involvement, it is that internet access, checking e-mail, using the Web is allowed at the discretion of attendees. At the last two meetings where I suggested this, people seemed a little caught off guard that this is okay. I want to change that. Just as in the Results-Only Work Environment, in the Results-Only Meeting Environment, respect for people deciding what is most important to them creates the pressure I like, that I/we need to be more interesting than an e-mail inbox.

Project HealthDesign Expo Washington, DC – It’s not the record, it’s what you do with it

September 17th, 2008 | Popularity: 31%
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Project Health Design Welcome I am at the Project HealthDesign Expo here in my hometown, along with many many other leaders in the personal health records world, including several members of the CCHIT Personal Health Records Workgroup.

Risa Lavizzo-Mourey, MD, is completing her opening remarks, and in them, she referred to the work of Douglas Engelbart. I have also been fascinated by his work and some time ago took the trouble to find videos of his demonstrations of the computer mouse and document editing on a computer in 1968. Pretty amazing.

Pictures below, click on any to see larger. I have been impressed by the amount of patient input provided in all of the work – a lot of things along the way demonstrate that these are different tools than we’ve seen previously to allow patients to be empowered in health and health care.


Stepping Through a Patient’s Experience with Hypertension: Maintaining control (yearly recheck)

August 26th, 2008 | Popularity: 31%
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This is fifth 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 has hopefully followed up and has hopefully been maintained on appropriate therapy (there is a 1 in 3 chance that this is happening). We are now in the maintenance phase, where it is recommended that a patient be checked once per year..

Click on the image to see it larger size


recheckyearly-eytan-htn

Patient Story (Frydman)

For today’s post, I am going to paste a dialog I had with Gilles, which contains some follow up questions I had about a new process for managing blood pressure


Ted: Ok, very helpful -

Gilles: I’d say amazingly helpful! See remark at bottom.

Ted: So what if the doctor said, “Your blood pressure in the office is high today. I don’t know if you really have high blood pressure though. Can I show you how to check it at home and will you check it twice a day, in the morning and at night, and then we’ll take the average and decide if you have high blood pressure?”

Would this make you anxious?

Gilles: I don;t think you can answer this question in a unidimensional fashion. It would probably be anxiolytic if this is the first time I heard of HBP. If this is what I hear at a repeat visit I almost certainly will be ready to hear 10 times more details about HBP. But if during the first interaction the doc would say “I don’t know if you really have high blood pressure though. Just in case maybe you could read the following information about HBP” and then give me some URLs like the Medline Plus entry or this one: http://www.ash-us.org/about_hypertension/index.htm. I think it would definitely prepare for a much better interaction the next time I saw the doc. In fact in case of diagnosis of HBP or changes of BP, I would definitely advocate for this method followed by a second visit not too long after. That is basically what my PCP does with me, whenever there is a change in BP. Follow-up in 1 week/10 days.

Ted: [It turns out that checking throughout the day isn't really helpful, twice a day is best]

Gilles: That’s good to know. I didn’t know. This is not trivial info and is not easy to find if you are actively looking for it. But it should definitely be part of BP home monitoring guidelines. If you check http://www.medicinenet.com/script/main/art.asp?articlekey=89718 you will notice no mention of what you just told me.

Ted: Let’s say your blood pressure was high this way. If the doctor said, “I would like to have you be in charge of checking your blood pressure, once every 3 months, for just one 7 day period, twice a day.”

Is this a routine you would be willing to follow?

I do not understand. You mean choose randomly a week during this 3 months window and get 14 basic readings as a result?

I would probably freak out, wanting to get feedback about the results ASAP.


Ted: What if the blood pressure cuff didn’t come from your doctor – what if your employer came to you and said, “For our employees who have high blood pressure, we are going to give them free cuffs to allow them to connect to their doctor.” Do you think this would or would not be a good way to change the ideas about measuring blood pressure, from a privacy perspective?

What if the messages about blood pressure being harmful came from your employer too – would this be welcomed, or would you think, “this is really something I should only get from my doctor?”

Gilles: I am certainly not an example for this. I would certainly distrust any involvement of my employer in health matters.

Ted: Last question – is this discovery, that BP was important to you, something you needed time to make, or do you think you would have made a change sooner if the initial conversation was different?

I think the conversation was not optimal at all. He is a real friend and a great doctor but evidently not the greatest communicator. But the conversation about learning about HBP and developing knowledge about it could very well be done by a trained nurse assistant. I strongly believe that instead of immediately treating it would have been much better to give me a solid dose of info RX. I am sure that I would have been early on a much more compliant patient.


Ted: I looked up what I know about time of day for blood pressure for you – I don’t have an accurate answer about apnea, but it appears that “morning” and “evening” have been selected because they correlate best with the possibility of stroke in the future, actually better than what your doctor would measure during the day.

I found this as well

“In persons successfully treated with CPAP, cessation of treatment causes blood pressure levels to increase, while restarting treatment causes blood pressure levels to fall again.”

from here:

http://www.aafp.org/afp/20020115/229.html

I think your presence will be very helpful next week.

Gilles: I don’t think I would have found this great article. So here is a clear example of how a 2 minutes interaction between a somewhat informed patient and a physician can produce real results. My family has a real history of apnea and I am convinced that there is a real connection. The input from a physician becomes more and more important as one starts to ask precise questions about the potential reasons for the HBP. Yes the internet is great but we all know there is a limit to the benefits. At some point the filtering done by an expert becomes fundamental. Maybe the internet has just shifted the level at which the filtering does occur.

Clinical and Public Health pearls (Houston-Miller and Eytan)

  • Patients are at risk for non-persistence and poor control if they have less than 1 health care visit per year or do not have blood pressure in the last 6 months.
  • The overall US control rate is 36.8%; The Healthy People 2010 goal is 50%.
  • This translates into 10.7 million Californians, with 3.3 million with controlled hypertension, a gap of 7.4 million people. (source)

Comment

Where is the data? and What’s Missing? From the conversation above, it appears that there isn’t good understanding about how to monitor blood pressure from home, either on the part of patients, or on the part of the medical profession. Prior to reading the AHA position paper, I did not know that a protocol existed for doing this accurately, and I would gather that most physicians that recommend home monitoring do not provide the guidance that is recommended by the American Heart Association, or desired by our patient.

The impact of this is that a patient may not monitor at the right times or with the right technique, resulting in changes to therapy that are inaccurate. In terms of what’s missing, without clear guidance from a physician besides, “Come in to see me and we’ll check it in my office,” the guideline or protocol is implicitly stated that blood pressure measurement is a physician-centric activity, even if the physician recommends home monitoring.

I of course welcome counter arguments to this hypothesis!

To close things out on the current state of affairs, here’s a slide show of all the pieces put together. Go through them as a group and notice where the data is in each case. Is it localized to the patient? Is the patient supported in engaging in the management of their condition outside of the medical office visit? And what about the stakeholders that are represented but not participating – the connectivity providers, the social networks. Can or should they be involved?

Final question: Should this current state continue? (Loaded question. Hint: Look at the results we’re getting with this approach)

Voice of the Customer: Impact of patient online access (or lack thereof)

August 26th, 2008 | Popularity: 24%
9 comments

This is a nice video from Consumer Reports Health of a patient who is unable to get health insurance coverage, because her physician has coded a diagnosis of “chronic obstructive pulmonary disease,” instead of “asthma.”

From time to time, I get asked, “what’s the business case for patients accessing their medical records online?” In this case, it might allow them to keep bringing business because they could alert their doctor to inaccuracies in their medical record which would allow them to keep their coverage. There might not be an inaccuracy in the first place – when we know our patients will see what we do, it changes our behavior.

In this case, the patient’s business case is clear.

From time to time, I also get asked, “will I get calls/e-mails from patients with questions about what’s in their medical record?” After seeing the impact to this patient and her family, I think this is the kind of e-mail or phone call a physician would be happy to receive.

Kudos to Consumer Reports Health for making their content embedable (is that a word?).

Voice Of the Customer (VOC)

August 25th, 2008 | Popularity: 10%
6 comments
  • Voice Of the Customer (VOC) – Sent my way by e-Patient Dave. So now I'm curious – can we set up VOC customer programs in health care? The first step is to define the customer as the patient – not every place I have been believes in this basic idea (basic to me anyway). I'm going to avoid creating a new term and stick with a term that's already accepted in industry. I have a tag on this blog called “Voice of the Patient”. Should I just use “Voice of the Customer” instead?

Stepping Through a Patient’s Experience with Hypertension: Setting Rates and Negotiating Benefits

August 14th, 2008 | Popularity: 38%
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This is fourth 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 has hopefully followed up and has hopefully been maintained on appropriate therapy (there is a 1 in 3 chance that this is happening). Now it is time for our patient’s health care sponsor (such as his employer) to review the health care benefit.

Click on the image to see it larger size

setrates-htn-eytan

Patient Story (Frydman)

There is no patient story in this phase. At some point during the year, our patient’s employer will discuss provided health care coverage with a health plan or plan(s) who have set rates for coverage in the coming year. On the diagram, there’s no red dot indicating the presence of data because in many (most?) cases there is not a lot of data to guide this conversation. Many health plans have claims data, to show how many services and what types have been paid for throughout the year. They may not have data about the effectiveness of those services. For example, they may not know what percent of office visits for high blood pressure showed effective control. On the employers’ part, they may not have much data, either. If they are self-insured, they may have similar levels of claims data, but not measures of performance.

Even in health care organizations with advanced electronic medical records, the determination of “% patients with appropriate blood pressure control” may not be done in an automated fashion – a random selection of charts may be used to come up with this percentage. The electronic health record may facilitate the selection and review of charts, but nothing more. This is dependent on the health care environment being studied.

(If there are health plan and providers who would like to inform this part of the story, comments are open)

Clinical and Public Health pearls (Houston-Miller and Eytan)

  • High blood pressure is one of the most costly conditions for employers, more than cancer, diabetes, heart disease, and behavioral health conditions. This does not take into account that hypertension is responsible for a significant amount of morbidity among patients with heart disease and diabetes. This post shows the costs of each. The first graph shows the cost per person with the condition. When you average the costs across an entire employed population, the large numbers of patients with hypertension escalates the cost of this condition above all others. For those people interested in the cost profile of chronic conditions to employers, The Center for Studying Health System Change hosted a forum where expert Ron Goetzel, Ph.D. provided an updated look at the data. It is compelling.
  • Fewer than 10% of the cases of undetected or uncontrolled hypertension could be associated with lack of health care use. In other words, health plans and employers are already paying for this current state. It does not exist because patients are not getting enough health care.

Comment

Where is the data? and What’s Missing? In this case, there isn’t much data in the conversation. The conversation is around use of services, and in that setting, an assumption is typically made that more services is better. The result is that these stakeholders cannot engage at their potential to ensure that services are as effective as possible.

It is possible that a patient or provider may share data about the effectiveness of their blood pressure control services which are being purchased and paid for by employer and health plan respectively. Blood pressure control is already a HEDIS measure, and is a development Pay for Performance measure in California in 2009.

Next post, the yearly checkback, completing the cycle. Comments welcomed, of course

Stepping Through a Patient’s Experience with Hypertension: Adjusting Therapy

August 8th, 2008 | Popularity: 25%
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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

adjust-htn-eytan

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

Stepping Through a Patient’s Experience with Hypertension: Making the Diagnosis

August 6th, 2008 | Popularity: 42%
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This is second of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension. We’re now past the discovery that something may be wrong, and at follow up with a personal physician. Recall that 1/3 of patients do not make it this far.

Click on the image to see it larger size

dx-htn-eytan

Patient Story (Frydman)

I was convinced that the HBP was just a temporary event due to stress and that by the time I had it checked by my friend the problem was gone. The measurements showed that I was completely mistaken. For the first time I was faced with the possibility that I was not really in control with a health problem. Even after a couple of measurements and a strong admonition from my friend to take every day the medicines he prescribed, I was still inclined to deny the reality of the problem. I remember telling myself: ” even if the problem is there to stay I can still afford to wait another 6 months before I become a compliant patient.” And I kept being this stupid and stubborn patient for another 1 1/2 year.

He said: “this is very dangerous. We do not want you to experience a catastrophic event. Therefore you must be treated”

For some reason, that is NOT the message that makes me understand that I really must be treated. There is clearly a missing piece in the way the doc is interacting with me, his friend. By spending maybe 3 to 5 minutes explaining the rational behind the proposed treatment he would have transformed the interaction from – he is forcing me to change – to – I understand why I must change

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!

Clinical and Public Health pearls (Houston-Miller)

  • Hypertension is the #1 reason for physician office visits in the United States (9.7% of all visits)
  • 20 % of patients diagnosed with high blood pressure do not actually have it; it is falsely elevated in the doctor’s office (called “white coat hypertension”). This results in unnecessary (and costly) treatment.
  • 10 % of patients measured with normal blood pressure in the doctor’s office actually have high blood pressure (called “masked hypertension”)
  • In recognition of the above, many health plans and Medicare reimburse for “Ambulatory Blood Pressure Monitoring” (CPT Code: 93784), which is a 24-hour, round-the-clock, blood pressure measurement. This type of measurement is typically a research tool and not used in clinical practice. There is no reimbursement for home monitoring currently.
  • The average of 2 home blood pressure readings is more predictive of mortality than screening blood pressures taken by nurses and technicians
  • 32 – 53 % of patients stop their medications by the end of the first year
  • A patient like this is considered “high risk” because he is male and likely to have another condition (such as high cholesterol)

Comment

Where is the data? The diagram and patient’s experience illustrate the fact that the information related to the diagnosis and treatment is typically localized to the provider, and not the patient. When a diagnosis is made, lab studies and medicines are ordered, and the patient’s health plan will receive a claim for the office visit. The patient is typically instructed to come back to the doctor’s office for reassessment, rather than doing self-assessments, and the patient is usually not given a treatment plan, or access to blood pressure and other data generated in the visit.

What’s missing? As in the previous vignette, the patient is without information regarding the significance of the condition, or resources to learn more / compare with other patients’ experiences. In my own searching, I have found limited social networking resources online for blood pressure management, relative to other conditions such as diabetes. This is beginning to change, though, as more organizations, such as the American Heart Association, become active in promoting self-management and personal health records.

Tomorrow, ongoing management and maintenance of blood pressure control. Comments welcomed, of course.


Stepping Through a Patient’s Experience with Hypertension: Initial Discovery

August 5th, 2008 | Popularity: 36%
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This is first of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension.

Click on the image to see it larger size

initial-htn-eytan

We’ll start with the patient story, told by Gilles Frydman, followed by clinical and public health commentary by Nancy Houston-Miller, RN, BSN, FSHA. At the bottom of this post, I have added information about our patient and clinical expert.

Patient story (Frydman)

I have always had at least a yearly checkup. 3 years ago, while spending a few weeks in the Texas portion of the Chihuaha desert, I noticed that I experienced growing moments of dizziness whenever I would stand up, tie my shoes or leave my bed. During my stay in Texas, a family member had a bicycle accident and ended up in the hospital, located 30 miles away because everybody feared a serious concussion or even worse. While waiting for results from the ER I asked to have my blood pressure checked. A nurse did check it and told me the equipment was probably deffective or something else went wrong and wanted to check it again. The second check showed an extremely HBP (200/130). I was instantly seen by a cardiologist and prescribed a drug to lower the HBP, with a warning that I was at high risk to suffer a catastrophic event if I didn’t bring the HBP under control. And then I was sent home, without any additional Information RX. (A medication was prescribed and Frydman was asked to begin taking it)

Clinical and Public Health pearls (Houston-Miller)

  • Blood pressure of 200/130 typically requires immediate assessment and treatment, with expedient (within 1 week) follow-up
  • 29 % of the U.S. population has hypertension, 76 % are aware of it
  • 1/3 of those found to have high blood blood pressure do not follow up
  • 10.6 % of Californians are diagnosed with high blood pressure
  • 12.4 % of an employee (working) population are typically diagnosed with high blood pressure

Comment

Although our patient was uncertain about whether a medical record was created in the Emergency Room, it is possible and likely that one was created, which contained the blood pressure readings and medication administration or prescription records. Because the patient was not given this information on discharge, the data involved in this episode remained with the provider who originally assessed the blood pressure. Patients may learn that they have high blood pressure in a variety of environments – a health fair, a doctor’s office, an employer-based screening program. In these cases, patients are typically asked to visit with their health care provider for diagnosis and treatment. Recommendations for interval monitoring are typically not made in these cases (today).

» Read more: Stepping Through a Patient’s Experience with Hypertension: Initial Discovery

Stepping Through a Patient’s Experience with Hypertension: Should It Continue This Way? (Intro)

August 4th, 2008 | Popularity: 29%
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We recently facilitated an exercise involving a patient, a clinical expert, and interested stakeholders at the California Healthcare Foundation, to look at the way a chronic condition (in this case, high blood pressure) is managed.

Over the next several days on this blog, I will step through our patient’s real story, along with clinical and public health commentary.

I created this cartoon from the exercise, suitable for downloading and discussion (
PDF version can be downloaded using this link
or click on the image directly to see a larger version):


lifecycle-htn-eytan

The cartoon is based on this output of our exercise which began with our patient’s story, clinical commentary, and the creative use of paper:

Patient Experience walkthrough - 1

Feel free to answer the question in the title of the post at any point.

I will explain the meaning of the symbols and the meaning as we go along.

By the way, the exercise resulted in this future state, which I’ll go over on the last day:


Patient Experience walkthrough - 2

Tomorrow: Step 1 – Initial Discovery

Now Reading: A Few Peer-Reviewed Articles About Patient Willingness to Self-Monitor

July 20th, 2008 | Popularity: 52%
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Patients' experiences and opinions of home blood pressure measurement

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

Systematic Review of Home Telemonitoring for Chronic Diseases: The Evidence Base

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

Comparison of acceptability of and preferences for different methods of measuring blood pressure in primary care

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 more: Now Reading: A Few Peer-Reviewed Articles About Patient Willingness to Self-Monitor

“Anything FP’s Can Do to Keep Teachers In the Building is Best for Our Kids”

July 16th, 2008 | Popularity: 11%
1 comment
With Duane Magee, Patient

With Duane Magee, Patient

Voice of The Patient

Voice of The Patient

The lunch time session at today’s Patient Centered Primary Care Collaborative Stakeholder’s Meeting included the voice of the patient, in this case a person who is a school principal. The quote in the title of the post is just an example of how the conversation changes when the patient voice is included. We stop thinking about health care as an end and more about life goals, with health care as a means.

Kudos to the meeting organizers for explicitly including the patient voice.


What are patients saying on their blogs about hypertension treatment?

July 2nd, 2008 | Popularity: 12%
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I decided to start recruiting the patient voice by seeing what patients are already writing about their condition on their blogs, using blood pressure as an example. I have set up a link cloud with all of these:

tedeytan’s bookmarks tagged with “patient_voice” on del.icio.us

I have also posted the last several below this. There are several impressive things about this review:

1. Patients are writing about their conditions – we don’t have to go far anymore to listen
2. Even for a condition that some medical providers might consider “not as significant,” there are significant feelings – fear of being diagnosed, fear of treatment, fear of being out of control
3. People are interested in knowing what they can about their conditions so that they can manage them confidently, and they may be asking each other as much (if not more) than their doctor.

Read the links attached to this cloud…and if you have others, post them or direct them to my del.icio.us account.

Michelle's Cancer Treatment Update: 2008-June 29-first chemo treatment in Seattle

July 2nd, 2008 | Popularity: 13%
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TMAGNUM FORUMS – Blood Pressure Medication (Patient Voice)

July 2nd, 2008 | Popularity: 15%
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husband given unknown medication – WORLD Law Direct Forums

July 2nd, 2008 | Popularity: 11%
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The Last Ten « MISERY ON THE MEND

July 2nd, 2008 | Popularity: 10%
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::FutureFashion:: || ::VoiceOut::: Sicking to celebrate

July 2nd, 2008 | Popularity: 9%
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Winnowings (Patient Voice)

July 2nd, 2008 | Popularity: 7%
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  • Winnowings – A patient goes to her doctor to make a connection between a diuretic and foot pain (likely causing a flare of gout)

The power of two: Random thoughts from a random guy

June 25th, 2008 | Popularity: 14%
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