Amid more data released that consumers are not using personal health records (PHRs) or don’t even know what they are, the state of West Virginia has launched a Web site designed to convince consumers of the merits of health information technology (HIT).

As best I can tell from eHealthWV Web site, here’s the plan: “To ensure consumer input and involvement in the process of health information exchange and electronic health records, WVMI and its partners launched a new phase to the project in mid 2007.  It involves educating consumers about electronic health records and health information exchange.”

I’m sure they mean well, but it would be helpful if one of these state efforts “ensured consumer input and involvement” by actually soliciting their input before designing their outreach. Right now, most states and health information exchange activities are focused on addressing consumers’ fears about data rather than their needs about health care.

Given survey data that highlights consumer concerns about privacy and security, it’s reasonable to ask: Why are consumers so focused on these issues with respect to health information exchange? It’s probably, in part, because consumers don’t care about data. How many consumers do you know who are passionate about data?

In contrast, consumers do care about their health…and resources that help them manage it. But most consumers have not experienced an electronic tool that facilitates the flow of appropriate information to them in a timely way.

Education can be bidirectional (or multidirectional or collaborative). Rather than framing the question as “how do we get consumers to understand why this is important to them?” we could start outreach and engagement by better understanding consumers’ needs with respect to managing their health.By taking a more proactive, user-centered design approach, such as used by the health system PeaceHealth in the Pacific Northwest, they could design tools and health information exchange plans that meet consumers’ needs rather than try to convince consumers about what they should care about with respect to management of their health. After asking consumers what health tasks they wanted to accomplish, developers created electronic shared care plans and other tools that met those specific needs.As I have blogged about before (and is described in an excellent New York Times Magazine article from 2007) this is the approach that pioneering companies like Toyota have taken to understand consumer needs. This is where the intersection of patient-centered care and HIT has so much promise. But we can’t get there unless we start by observing and talking to the consumers themselves.

Maureen Larkin from HealthLeaders wrote an interesting piece today, “Work With Me, Doc,” about issues of health literacy and the pressure on consumers to digest health information. She makes some interesting points about how much responsibility should consumers bear for learning about their health issues outside of their doctors’ offices.

In a white paper that the IxCenter published with the Foundation for Informed Medical Decision Making a few months back, some patient-centered care and shared decision-making (SDM) experts raised some similar issues. When we interviewed one of these experts, Susan Edgman-Levitan, she reported, “What I run into frequently with patients when we talk about shared decision making is they get really nervous that we’re expecting them to be their own doctors.”

In that paper, we try to clarify what SDM is all about, but no doubt semantics get in the way of what we’re really trying to communicate. In fact, the goal behind information therapy (Ix) is to make it easier for clinicians and patients to use health information together as a communication tool to promote better and more productive interaction between them in the limited one-on-one time they have together.

But there is no doubt a growing issue related to how much responsibility is being delegated to consumers. The reality is that it’s perceived diferently by different people; one person’s empowerment is another person’s burden. What we need to do with Ix initiatives is match the dose, frequency and duration of Ix to the individual’s needs and desires.

Two days into my vacation, my 4 1/2-year-old wakes up with some wheezing. As I wrote in April, his first asthma event was a shock to us but because it came during one of the worst pollen seasons in recent memory this spring and he had no symptoms since that initial course of treatment, it had settled deep in the back of our minds.

We were a few hundred miles from home (where Ryan’s nebulizer was) and couldn’t figure out what to do, so we called our pediatrician on-call that Sunday morning. She advised us to seek care before beginning the second leg of our vacation journey (another 6-hour drive).

I spent a couple of hours reading books to Ryan at the nearest urgent-care clinic. The facility and clinicians were fine, but did not provide clear explanations and–although I did leave the office with a written after-visit summary–it was completely disconnected from my previous care experience.

I desperately wanted access to a personal health record (PHR)–some tool that would allow me to connect Ryan’s past asthma encounter with the current event. I knew that the medications were different, but was unclear as to the rationale.

• Why is he getting just one inhaled medication (the albuterol for short-term relief) instead of two (no Pulmicort or other inhaled corticosteroid for long-term control)?
• Why did they prescribe an oral steroid this time instead?
• How necessary is the prescribed antibiotic since he only seemed to have a cold (in fact, we decided not to fill that prescription and it turned out he clearly didn’t need it)?
• Perhaps most importantly, how do we monitor his progress and know how often to give him the inhaled meds?

Ryan seems to be doing fine now, but we clearly need to set up more of an asthma care plan to be prepared if/when something else triggers another respiratory reaction. I hope I can find the right tools to help me and his mom manage this condition in the long term.

Research continues to show that patients do not remember - or understand - everything they are told when they are discharged from medical facilities.  An earlier Ix Blog post on health literacy and patient recall discussed findings such as 14% of patients being unaware of the fact that their physician had prescribed a new medication for them.

A more recent article in the Annals of Emergency Medicine found a strong tendency for patients to overestimate their understanding of emergency department (ED) care and discharge instructions.  Patients had more difficulty understanding post-ED discharge care instructions than information about the diagnosis and cause of their illness, ED care, or return instructions.

This research finding suggests that asking patients whether or not they understand medical instructions is not an adequate way to measure comprehension.  Although handwritten or printed discharge instructions are considered a best practice, this should not be the only method of communicating discharge instructions to patients.  Asking patients to explain information or instructions in their own words may be a better strategy for assessing patient understanding and providing clues about where to focus further discussion and explanation.

I have always been against HMO’s.  I didn’t want someone telling me that I had to choose a doctor within a certain group.  So when I started at the Center for Information Therapy and had to choose my health insurance and my former carrier United Healthcare wasn’t an option, but Kaiser was, I didn’t know what to do.  As I did my research, I found out that Kaiser had a “Flexible Choice” plan which meant that I could choose a doctor in or out of network.  Now that was a good compromise.  At that time, I began to feel really bad, stomach pains that wouldn’t stop and decided that I needed to see someone right away so I went to Kaiser and chose a primary care doctor that I didn’t know but who could see me the next day. 

I was very nervous but when I got there I was pleasantly surprised.  It was one of the best experiences I ever had.  Everything was in one building.   There was a computer in each exam room and after my doctor and I talked about my symptoms he began typing and entering all of my information in the system.  He then informed me of all the tests he wanted to run and why.  I didn’t have to go anywhere else for my tests and once the test results were in, I was sent an e-mail so I could go on-line and view my results right away.  When I left, he handed me a print out of everything we went over and the next steps.  I was amazed.  Who knew that this even existed?  After reviewing my tests he initially thought I had pancreatitis but later ruled that out.  After about 20 tests he still couldn’t tell me why I am in constant pain, sometimes not able to sleep and my stomach burns and still hurts every day. 

At that point he recommended a Gastro specialist outside of Kaiser.  When entered the exam room the doctor began discussing my symptoms and told me what he thought. He had reviewed my file and was able to see all of the tests that my primary care doctor had conducted and told me what he thought the next steps should be.  He had all of the information right there, I didn’t have to try to remember what had been done, we didn’t have to start from square one, it was refreshing and he was able to give me the Right Information at the right Time for me!  WOW, what a concept.  On Monday, I will go in and have an endoscopy.  They will look at my stomach to see if I have multiple ulcers take samples etc.  I am just ready to feel better.  In looking back at the experience as a whole,  I wonder how this would have played out at my former doctors office in North Carolina. They didn’t have a network like Kaiser.  I suspect this process would have been very frustrating without all of the information that I was provided after each visit and getting the results would have been another challenge. 

How do we integrate these kinds of systems with individual physicians that don’t have all of the resources like a Kaiser or Group Health?  Being sick is stressful enough, especially when you don’t know what is wrong, shouldn’t  Getting the Right Information at the right time in your moment of care be the norm and not the exception for all patients in the delivery care process?

In our world of the Internet, where “googling” medical information has become a commonplace exercise in the pursuit of personal knowledge, the old dynamic between patients and doctors seems to have shifted. For many consumers, the days of relying only on information prescribed by a doctor have given way to a new age of self advocacy in preparing for healthcare visits. Coming equipped with knowledge instead of just waiting for information seems to be a trend that is here to stay. But some doctors seem to find this more of a hassle then help. The new phenomena of “medical googlers”, is defined as  patients who conduct medical research prior to seeking the expertise of a health care provider. As the title “A Doctors Disdain for Medical Googlers” demonstrates, some health care providers, particularly the doctor noted in this article, give a negative connotation to this type of health patient.

The doctor’s perspective was interesting and while he may have come off looking like the “bad guy”, one can understand that in this particular experience he was dealing with a patient that was overzealous to a degree bordering on disrespect. But to discuss this new phenomenon in a broader context, we must see the larger implications. Yes, it may be difficult for a doctor to have a patient walk into their office having read so much previous internet information that they distrust the content then provided to them by their doctor. But if health care providers were providing consumers with the necessary information in a comprehensive manner, if they were taking the necessary time and approach tailored to that individual patient, then this overwhelming dependence on Google may not exist at the same level. This is not to say that seeking information across mediums is a bad thing. Googling medical information is fine. The problem arises when looking up medical information online becomes a direct result of a distrust of and loss of faith in the doctor patient relationship.

A recent University of California study reports a striking increase in fatal medication errors (FMEs) over the last 22 years.  The study examined accidental deaths occurring at home, but also included deaths occurring away from home.  The deaths were further categorized into those involving alcohol and/or street drugs and those not involving alcohol and/or street drugs.

The most striking increase in FMEs was with those that occurred at home, especially those involving alcohol and/or street drugs (a 3,196% increase).  FMEs at home, not involving alcohol and/or street drugs increased by 564%.   FMEs that occurred away from home involving alcohol and/or street drugs increased by 555%.  Finally, FMEs away from home, but not involving alcohol and/or street drugs increased by 5%.

Shifts in health care have resulted in reduced professional oversight and increased patient responsibility for monitoring medication use.  Information therapy prescriptions can play a critical role in complementing medication prescriptions.  If consumers are expected to manage increasingly complex - and potentially dangerous - drug regimes, they need access to tailored information to help them do so safely.

Josh has been around since the inception of the Center for Information Therapy 7 years ago.  When I first joined the IxCenter this year, I heard that Josh never takes vacations.  I also heard that he never calls in sick.  His dedication to the IxCenter is unmatched. 

Josh bravely left us in charge of the IxCenter Blog for the next two weeks.  Who are we?  We are Joie Hawkins, Emily Jacobs, and myself (Cindy Throop).  We all work here at the IxCenter.  We will each be contributing to the Blog over the next two weeks.  We will be sharing interesting bits of research, our thoughts on Ix, and last but not least, consumer perspectives.  After all, we are all consumers. 

 Thanks for reading and join us in wishing Josh an enjoyable and well-deserved vacation!

New and important data came out from the Commonwealth Fund today, though–to many people–it may be a big “duh!”

Commonwealth had Harris Interactive do a survey of one thousand adults and found:

• Nearly three out of four (73%) Americans report some sort of barriers accessing doctors in a timely manner.
• Nearly half (47%) report some coordination of care problems.
• Large majorities want their physicians to use a variety of HIT including electronic health records (89%), electronic prescribing (71%), whereas most consumers (91%) cannot access their medical records via the Internet, many of whom would like to do so (49%) and even more would like to be able to schedule appoints online (57%) and communicate with their doctors via email (58%).

I blogged last week about the insights Secretary Leavitt shared at the Kaiser Family Foundation forum on the health blogosphere. I noted some of what he had learned from his year of blogging.

I noted to other colleagues that—although there was nothing groundbreaking in his remarks—there were insights gained that are probably similar to what most of us who have been blogging would have picked up. In other words, the learning process transpires through the action itself.

I thought it amusing when I was reading the Week in Review section of today’s New York Times, in which Mark Leibovich has a piece titled, “Hail to the Twitterer.” Leibovich discusses McCain’s and Obama’s use of technologies and whether differences are important for leading the country in the 21^st century.

Leibovich relays the following anecdote:

“You don’t actually have to use a computer to understand how it shapes the country,” said Mark Soohoo, a McCain aide for online matters, at a conference on politics and technology. “You actually do,” interrupted Tracy Russo, a former blogger for John Edwards.

Secretary Leavitt’s experience and lessons learned suggest that Russo is correct. We gain a lot by actively trying and doing things. The third-hand learning experience has less of an impact and shapes the way we envision the world differently.