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

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)

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) - 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?

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

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

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

Click on the image to see it larger size

Patient Story (Frydman)

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

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

Clinical and Public Health pearls (Houston-Miller)

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

Comment

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

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

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

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

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

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.

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

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 the rest of this entry »

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):

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:

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:

Tomorrow: Step 1 - Initial Discovery

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

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

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 the rest of this entry »

With Duane Magee, 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.