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.

Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. Patients’ attitudes to the summary care record and HealthSpace: qualitative study [Internet]. BMJ. 2008 Jun 7;336(7656):1290-1295.[cited 2008 Oct 2 ]

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.

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?).

• Think Before You Voicemail - Sentiment about older modes of messaging. If the general public doesn't like it, maybe we shouldn't force our patients to, either.

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 »

• Essay - Fed Up With the Frustrations, More Doctors Change Course - NYTimes.com - I am sympathetic, and this is the reason I champion LEAN wherever I go - the processes we use in health care can be changed, and we can involve patients and our families so that everyone works together to be healthy. The challenge for physicians is that we are not trained at all in process improvement, so we usually enter environments with broken processes, and manage these situations with the training we have been given, which doesn’t lend to collaboration. See this blog entry for examples of extreme challenges in our medical education system today. I sometimes say that we’re all actors in a play that has a script we didn’t write. Let’s rewrite the script (patients and their families included).

  If anyone wants to collaborate on a medical student rotation looking at LEAN concepts / process improvement / patient centered care / respect for staff and customer, let me know. This presumes that there’s a medical school either teaching this or interested in this. Is there?

• NAHIT Releases HIT Definitions | News | Healthcare Informatics - Long awaited, and helpful. The difference between "P" and "E"HR appears just to be control. "P"HR is controlled by the patient. I still believe that the customer of both is the patient, and these definitions are consistent with that idea.

December 24th:

• The etiquette of telecommunications | Getting the message, at last | Economist.com - The economist describes the first incident of spam, via telegraph.
• Are Suggestion ?Boxes? the Best Way to Go? | Lean Six Sigma Academy - Also interested in employee empowerment as much as patient empowerment. I should have installed one of these in my office before I went on sabbatical.
• Training Within Industry: Lean Jargon - Part III, Gemba (Genba), Genbutsu, Genjitsu - Catching up on my LEAN studies. Helpful guide to common LEAN terms. These are my favorites.
• Out of the shadow — Calman 19 (1): 170 — Health Affairs - Bearing witness to inequities for those we are trying to serve. I am having similar experiences in my work, and it has impact. Great article by Neil Calman, MD.
• Rising Popularity of Medical Blogs Raises Questions About Anonymity, Reliability - iHealthBeat - This is an important topic to me as a physician blogger. I do not blog about patient experiences except in the most general terms. At the same time, I think patients want to improve the system they get care in and we should (or I am) develop best practice
• Cultural Tourism DC - U Street Heritage Trail - Great map and walking tour of African American History. Perfect for the nation’s most walkable city

• Business Writing: A Great Letter from My Doctor - Good written communication makes a difference. From a Group Health patient.
• Blackwell Synergy - Family Process, Volume 37 Issue 1 Page 3-15, March 1998 (Article Abstract) - Article by Kathy Weingarten on Postmodern Narrative Therapy
• Treatment Dedication Project - Empowering patients undergoing cancer treatment through dedication.
• Microsoft customizes its workspaces - I suppose sliding glass doors are becoming the norm. Video of new Microsoft Research Facility. Note the Metro-type entrance gates.
• 60 Minutes - Here Come the Millenniels - GenY - All Carrot, No Stick. GenX - forgotten….