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

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- <a href=@epatientdave should be on ... (20090427)" title="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.






Photo Friday: California Healthcare Foundation including the Patient Perspective

Bryan Bush, Patient Advisor

This week’s photograph was taken at California Healthcare Foundation offices in Oakland, California, where patient advisor Bryan Bush is part of an advisory group was assembled to discuss the “Clinic of the Future” Initiative, described as

The goal of this initiative is to stimulate large scale, substantial, sustainable and scalable improvement for patients and providers in the way safety net clinics provide high quality care to the underserved.

Bryan is a patient of Sebastopol Family Health Center, which I have profiled (and cheerleaded here) previously, and as I have observed in other environments, helped center the conversation. Bryan told the group that in his former primary care environment that “It’s hard when you start to care (about your health) to not be able to see your doctor.” He also told the group that Sebastopol’s patient portal will be one of the sites he bookmarks (“it will be one of my favorites”) when it goes live – “It will be lifesaving.”

That’s Mary Szecsey to Bryan’s left, and Jason Cunningham, MD, to Bryan’s right. Together they are innovating in Bryan’s patient experience by providing him with the primary care he needs when he needs it, and by bringing him into the conversation about how their primary care is designed for patients and families.

Jason Cunningham, MD

When people are ready to promote patient empowerment/engagement, what can they do?

The title of this post is a variant of the title of another post (“When physicians are ready to promote patient empowerment/engagement, do we want them to do?“). That post came about from a conversation with another physician. This one is coming about with a conversation with a person, not a physician, Erica Brand, who works in silicon valley and is interested in the same idea.

We got in touch because Erica has been following the work of myself and the e-patients.net group, and on reflection of her own experience with health care is interested in making a difference.

We talked about different opportunities for someone with talent in an industry that is not health care could help health care succeed, and there are lots of them. For example, depending on who a person’s employer is, they may belong to a coalition of employers focused on health issues. In California, this might be The Pacific Business Group on Health, or in silicon valley, the Silicon Valley Employers Forum is an affiliate of PBGH, which is also a place to get involved in transforming health care.

As I look back at the original post, though, the advice/recommendations are generally the same, which says to me that we all have as much if not more in common as fellow patients than we do being in health care / not being in health care. I still think health care can learn a lot from other industries and we should welcome all of the help we can get, and I think talent is talent regardless of the industry that it comes from. In the era of Health 2.0, the improvement of health is truly democratic.

It is nice to discover in these conversations that there are many people who want to bring their professional and personal experiences forward to help us improve. Come join us!

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

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.

When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

This question was posed to me by Ann Barber, MD, who I just spoke with. Ann reached out to me because she has been following the work of the group at e-patients.net, and specifically their call to recruit physicians to support the patient empowerment movement. Ann is an internist who specializes in hospital medicine, and has recently relocated to New York.

Ann asked me the question in the title of this post, and in talking with her, I decided to ask it here as well, because I’m unsure of the answer.

I wondered if this is because I/we have assumed that the majority of physicians are not interested in empowering patients, and therefore we don’t know how to support those that are?

I did a mini-check in with myself on this, and although I have alluded to some physician groups still feeling challenged by the idea of patient empowerment on this blog, the majority of my writing here points to the idea that physicians are very interested in empowering patients, because they want to perform well for them. The overwhelming majority of my posts here point to that idea, and here’s just one example.

Back to the question – where should a physician start when they have the energy and drive to make a difference in this area? When they interview for positions, what vocabulary should they use to describe what they are looking to do? How do they find the institutions in their communities that are already forging ahead in this area? If there are no institutions identified, how do they find the ones that are open to new ideas/thinking in this area?

My suggestion was to walk the hallways of any potential medical center employer and observe and ask questions – how are patients and families involved in their care? Do nurses and doctors round at the bedside (like they do at Medical College of Georgia, and hospitals in the Kaiser Permanente system [article in Harvard Business Review describes this] )? Are there visiting hours? How does the institution keep families and informed throughout a hospital stay?

I recommended a few resources, including the Wachter’s World Blog, written by hospitalist expert Bob Wachter, MD, the Institute for Family Centered Care, to find institutions in a community that are practicing patient and family centered care in New York, and of course, HelloHealth in Wlliamsburg.

I think the inpatient setting is the next frontier of patient and family involvement in their care, enabled by technology, and welcome the creativity of Ann and other hospital medicine specialists who want to make a difference for patients and famlies everywhere, which is why I wanted to think about this more.

Are there other ideas for Ann and the physicians in our profession who are among the “already recruited?”, in New York (and beyond)? Post them in the comments, please!

And thanks to e-patients and all the patients who have made it easy to remember who I am accountable to.

Now Reading: Patients’ attitudes to the summary care record and HealthSpace: qualitative study

This is another article passed to me by Sophia Chang, MD, as it relates to another area of our work together, promoting patient online access in safety net health care organizations.

The work is a qualitative study of attitudes of a group of patients representative of low health literacy, “potentially stigmatising conditions,” or difficulties in accessing health care regarding the National Health Service’ Shared Care Record (SCR), which appears similar to our Continuity of Care Record. It currently has medications, allergies, and adverse reactions, and is scheduled to include a minimum data set. Also discussed with the participants was the HealthSpace, which is a “personal health organizer available via the Internet,” so my guess is, similar to what we call a personal health record.

Despite the fact that 95% of the population in the sample area received a letter informing them about the SCR and HealthSpace, there is very little recall of SCR, HealthSpace, or even the letter itself (14 %). Some of the useful points for us to think about for a safety-net population:

  • People without “potentially stigmatising conditions” including their official advocates (required to be included in the study) were unfavorably disposed to the SCR. However, people who actually had these conditions felt the benefit outweighed the risk. The authors highlighted this discrepancy even more by citing advocates as “people who claimed to speak for vulnerable groups.” It is in interesting what we find when we talk to the patients themselves.
  • Speaking of patient involvement, it is not clear from the article how and if patients were involved in developing the materials mailed to community residents. Clearly this is a very complex program and from the comments it appears that explaining the SCR and HealthSpace is akin to explaining how the health care system works in general. It’s a great magnifier of problems elsewhere perhaps.
  • “Empowerment” versus “Engagement” – comments suggest that those who are actually less engaged have more favorable opinions of SCR and unfavorable opinions of HealthSpace, indicating that they see the SCR as an advantage in reducing personal responsibility. The authors say this should be discussed further, and cite the work of Judith Hibbard and findings that “empowerment” may require cognitive skills that “not all citizens possess.”I suppose what I make of this is the idea that by itself, these technologies don’t create engaged behavior in patients that we expect. At the same time, I’ve discussed the idea that they do create different behavior in the clinicians who are accountable them.

So how would I apply the information here in the promotion of patient online access in the safety net? I might think about involving patients in the design of systems up front, to make sure that the features are compelling to them. I would convene focus groups (maybe with the support of an interested funder) to look at everything including marketing materials and approach to make sure that efforts aren’t wasted.

This article is a helpful reminder that even with the best intentions, those who design programs don’t live the lives of those who should benefit from them, and as I tweeted recently, people with chronic illnesses think about them for longer than the time they visit a medical center or log into a web site.


Now Reading: Three Articles on Health Information Technology Adoption

When I read these I thought about what my opinion was about them, and what I might write in a blog post about them. I didn’t really want to critique their opinion or lay mine on top, because I think the pieces stand up well on their own, and I am no more connected to the facts than these authors are.

So I thought I’d just end up writing a post that said that I read these articles (I know, uncharacteristic of me).

Then, I stepped on the Washington, DC Metro, and this advertisement, for a local hospital stared me in the face:

It'll be okay

I looked at it several different ways – on the one hand, the implication is that if your child has a serious spine problem, they will take care of it. However, if you do not have a child with a serious spine problem, should you go elsewhere for primary care, or are they good at that, too?

Is 3-D imaging today’s marker for quality health care? That’s what brought me back to the point of these three pieces.

In my travels, I don’t often see advertising for health care organizations that say, “Come to us for your primary care, your child is more likely to be immunized by us.” Or, “Come to us for all of your care – we’ve been rated the best listeners in DC.”

Here’s another example from my Twitterfeed. How did health care come to this?

What these pieces do for me is support the work to move to a system where the customer is the patient. The care experience should be as good as any a person can get from any other industry, online or offline, and one that is accountable to it for the things patients care about. It’s not how many personal health records there are, but how often patients and families make meaningful decisions to stay healthy because of them.

For me, this is where the energy comes from around patient access, patient and family involvement in care, and in the design and improvement of the health system.

Finally, I just re-acquainted myself with this quote yesterday, from my reading of A Fortunate Man, by John Berger about a country doctor in 1967. Here’s what the author said about computers in medicine back then.

It may be that computers will soon diagnose better than doctors. But the facts fed to computers will still have to be the result of intimate, individual recognition of the patient.

Was he right? (rhetorical question)

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

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?).

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

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….

Continue reading “Now Reading: A Few Peer-Reviewed Articles About Patient Willingness to Self-Monitor”

High Blood Pressure as a Foundation for Connectivity: Telling The Story Via Cartoon

I am experimenting with storyboarding using cartoons to help people visualize how to connect Californians to better management of a chronic condition. The goal is for potential partners and patients to see the value of a program like this, and add their input based on technical and clinical knowledge. Full storyline coming…working on getting patient involvement. On that note, is there anyone out there managing high blood pressure that would like to be a patient advisor?


hypertension cartoon