The social networking pioneer Dan Hoch (who co-founded the famous BrainTalk Communities site) posted a provocative commentary on e-patients.net today titled “Information Overload: Problem or Not?”

Hoch notes that the information overload across industries has given rise to the Information Overload Research Group, which is dedicated to “reducing information pollution.” I agree with Hoch that the Internet’s information democratization has been an important driving force behind what he terms the “e-patients movement.” No doubt that is a critically important contribution.

I would never suggest that consumers should be prevented from unfiltered information. But availability of all information on a topic does not equate with real access to meaningful, usable information for everybody. For some people, OD’ing on information may not be possible but many people would like to get guidance from other sources–that could be their personal physician, another health care professional, a community health worker, or another person who shares the condition.

As stated on this blog earlier in the week, Susannah Fox noted that Pew Internet Project data demonstrate that 80% of Internet health information seekers turned to a professional in a time of crisis, and that this figure is much higher than any other information that Pew studies.

Those of us who advocate for information therapy (Ix) never suggest that information should be available “by prescription only.” Information prescriptions are simply another tool, designed to help people navigate the vast information that exists in cyberspace and elsewhere.

(Continuing to follow up with commentaries on insights from the 7th Annual Ix Conference…and the slides are not only available now, but they also are right-side-up!)

The day before the Ix conference, the California HealthCare Foundation released the report (“Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools”) that Ted Eytan and I authored summarizing the Patient-Centered HIT Initiative (funded by CHCF, the United Hospital Fund, Kaiser Permanente, and the Group Health Community Foundation). At the conference, Rachel Block–formerly with UHF and now the Executive Director of the New York eHealth Collaborative–provided an excellent overview of the project with a particular emphasis on our experiences with safety-net populations.

Susannah Fox–Associate Director of the Pew Internet Project and also a member of the PCHIT Advisory Group–responded with a presentation highlighting the digital thermometers she has created with Pew data. They provide a great snapshot of consumer use of Internet/email, cell phones and broadband, broken down by a wide range of demographic characteristics. Susannah has explained that access to electronic technologies is not a matter of a “digital divide” because access is not an “on-off switch” but more of a “dimmer switch.”

A few of her comments beyond the thermometers are worthy of considerable thought as we figure out how to maximize the potential of Ix and patient-centered HIT.

• Susannah notes that 80% of Internet health information seekers turned to a professional in a time of crisis–far greater than any other industry that Pew studies.
• It’s clear that low access does not equate with low interest–a finding that matches exactly what the PCHIT Initiative found.
• To better understand the Internet’s potential for health care, it’s critically important that we talk to those people who are not online as well.
• The world is changing rapidly, so it’s important to (as Susannah paraphrased Diana Forsythe) “design for what could be.”

What do all these findings from Pew and the PCHIT Initiative report mean for next-generation patient-centered care?

(Continuing to post on some of the session from our 7th Annual Ix Conference from June 12-13. Note that the PowerPoint presentations are now available. We had a minor glitch in our transfer to PDFs, so you need to rotate them sideways. We’ll get that fixed tomorrow.)

One of the most innovative Ix leaders in the safety-net provider community is Neil Calman, MD, the CEO of the Institute for Family Health (IFH), a network of federally qualified community health centers in New York. He presented in our Ix & Health Disparities Track in a session on “Engaging Safety-Net Providers in HIT” with Kyu Rhee, MD, MPP, Director of Innovation & Program Coordination, NIH Center for Minority Health & Health Disparities. IFH was one of the sites we visited during our Patient-Centered HIT Initiative.

Neil has a direct way of putting things and his presentation probably set a PowerPoint font size record. He started off by telling the audience that, “For the past 6 years we have done everything we could to help bring information to our patients to help them improve their health.”

He then frames this in terms of what it means for the clinicians at IFH: “We have worked really hard to be a model for how electronic health records could be used to help us become…Information Therapists!!”

Neil explained what they learned from their patients when they studied what the health care experience was like for people with chronic conditions in the southwest Bronx. What they found out was that–for many of them–going to the doctor’s office was often “traumatic.” They found two really important things. First, there was great distrust of, and disrespect by, health care providers serving racial an d ethnic minorities. Second, there was bad communication resulting in major misunderstandings.

So when IFH decided to invest $2 million in its EHR deployment, they did it with these two lessons from their patients in mind. Neil said, “We deployed our EHR in a way that would build trust wit our patients. And give them the tools to help them find their way through the health care system.”

That’s why they designed their exam rooms so there were flat-panel monitors that clinicians and patients could look at together and put printers in there so clinicians could print out Ix for their patients and hand it right to them.

It’s amazing what clinicians can do for their patients in EHR implementation if they start by asking them what they need and then bake that into their implementation plans. It’s too bad that’s not a requirement for every EHR deployment in the country.

Paul Wallace (now Medical Director for Health & Productivity Programs at Kaiser Permanente and Chair of the IxCenter Board of Directors) closed out the first day of last week’s 7th Annual Ix Conference with some insights on how we can modernize health care effectively.

He noted that he came of age as a physician during what he termed “Health 0.0.” Although much of health care is now being practiced in a “Health 1.0″ mindset as information flows more freely, there is still a long way to go until we’ve reached the Health 2.0 goals of on-demand, 24/7 access to information that can be democratically created.

Paul pointed out that we need to figure out how to hold onto the close in-person relationships from 0.0, and build the information flow from 1.0 as we create the social networks and real-time information access of 2.0. The goal they all have in common is building trust–one of the most important elements in an ideal health care delivery system.

Ideally, the new tools of Health 2.0 will actually help us do a better job of meeting the demands of 0.0 by creating more efficient ways to allow for personalized health care. How can new technologies enhance our ability to take care of people one patient at a time?

The American College of Cardiology’s Cardiosource Video Network has posted a new four-minute video segment on “Next-Generation Patient Care.” The segment provides an excellent summary of the issues addressed at last week’s 7th Annual Ix Conference.

Sometimes when I talk about information therapy (Ix), I get a lot of head-nodding, but people still don’t fully understand what Ix really looks like in practice.

That’s why one of the most illuminating sessions at the 7th Annual Ix Conference next week (June 12-13) at the Newseum in Washington, DC will be, “Ix Killer Apps: Patient-Centered HIT in the Real World.

Specific Ix applications to be discussed include after-visit summaries, pre-visit preparation, multimedia decision aids, medication reconciliation, Ix for lab results, and use of health risk assessments for delivering more tailored information prescriptions. Both electronic and paper solutions will be addressed.

We’ll hear from innovative leaders from different kinds of practice settings and opposite sides of the country.

• James Hereford, Executive Vice President, Strategic Services & Quality, Group Health Cooperative
• Bill Kormos, MD, Education Director, John D. Stoeckle Center for Primary Care Innovation, Massachusetts General Hospital

After I provide a five-minute Ix overview, these leading innovators will demonstrate how Ix has been implemented in their disparate delivery settings. They will discuss the strategic reasons for pursuing Ix initiatives, issues involved in implementation, and their impact on care and efficiency.

If practices can implement these tools efficiently, they really will have nailed some “killer apps” by providing tools that really make a difference in the lives of their patients. Join us next week to figure out how to make this happen.

At the 7th Annual Ix Conference, “Next-Generation Patient-Centered Care,” we are having a track on the second day about The Role of Ix in Enabling the Patient-Centered Medical Home. We’ll have quite varied perspectives on the topic, ranging from the American College of Physicians to innovative implementers.

One of the big questions that will be addressed by Kaiser Permanente physician David Sobel (a guru for decades in health education and engaging consumers in managing their own care) is, “Who’s the PCP in the patient-centered medical home?” and “whose home is it anyway?” Here’s the abstract for his session:

Who’s the PCP in the Patient-Centered Medical Home?
David Sobel, MD, MPH

Whose home is it anyway? And is anyone home? A true patient-centered approach recognizes the patient as the true primary care provider and the true medical home needs to be designed and built with patient involvement. What are the basic structural requirements for a patient-centered medical home to serve patient’s need for information, care, and psychological support? How can emerging technologies allow for remodeling of the home? And how can subcontractors (i.e., health professionals) be managed and retrained to allow for co-habitation and true partnership? What skills do home-owners need? Finally, even if the financing and incentive issues could be solved (e.g. in a prepaid group practice), what walls still exist to co-ownership of the medical home and how can these walls be remodeled?

David always taks a thoughtful and provocative approach, and I think it will be a good way to frame the debate.

Other faculty for this track include:

• Rushika Fernandopulle, MD, MPP, Co-Founder, Renaissance Health (Track Chair)
• Michael Barr, MD, MBA, Vice President, Practice Advocacy & Improvement, American College of Physicians
• Ted Eytan, MD, MS, MPH, Medical Director, Health Informatics and Web Services, Group Health Cooperative
• Kerry Meyer, PhD, ARNP, RN, Care Manager, Valley Medical Center, who will be presenting with one Valley’s patients

If you’re interested in seeing what the real opportunities are for patient-centered medical homes, come to the conference next week (June 12-13) at the Newseum in Washington, DC.

There’s been a really passionate and constructive dialog transpiring on The Health Care Blog triggered by Pew Internet health expert Susannah Fox’s post there on “E-patients can and will revolutionize health care.” I have weighed in with a couple of observations connecting what Susannah and many advocates describe as “e-patients” with the goals of information therapy (Ix).

The first post focused on how Ix can facilitate e-patients’ connections with their clinicians:

Peter’s point is important because a reluctance of clinicians (and/or systems to support them) to embrace patients’ use of new technologies often leads to “parallel play” in health care–where people end up pursuing two parallel tracks for tackling their personal health. In fact, Susannah’s Pew research demonstrated that–when told by their physicians to stop going online–most consumers either said they’d either switch doctors or “go underground.” In other words, consumers end up using the Web to address their health care needs but don’t talk about it with their clinicians–a recipe for (at best) inefficient care.

That’s why developing strategies to integrate targeted health information and personal electronic tools into the care delivery process (a.k.a. information therapy or Ix) is so important and has so much potential. That integration of patient-centered care and HIT is the focus of the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care,” (June 12-13 in Washington, DC) where Susannah and other advocates for e-patients will be presenting.

The second post was really to help clarify that Ix is not meant to impede the efforts of e-patients–in fact, it’s just the opposite: Ix tries to help provide a better infrastructure for e-patients to gain support from other resources…

I completely agree with Cheryl that it was imperative for her to take control of her own care. And thank goodness she did! I have heard Cheryl’s personal story before, and she provides a powerful demonstration of the potential for e-patients to change the course of their own lives.

Regarding John’s questions, for some people, online searching works fine. However, many others report that they feel lost in the maze of information spun by the World Wide Web–reporting problems with some combination of: finding the most relevant information for their specific needs; understanding it; remembering it; and/or contextualizing it.

That’s why consumer surveys consistently report that, when asked from where they would most like to get information, consumers’ first choice is their own physicians.

That’s not at all to say that consumers shouldn’t access information on their own; I certainly do it all the time and I think everybody should do so as much as they want. In fact, one of the reasons why we’re holding this year’s Ix conference at the Newseum is because of how fervently we believe in consumers’ free access to information–thus the link to the celebration of the First Amendment.

But most consumers would prefer that their clinicians could support them in that process through: pointing them in the right direction; sifting through questions that arise together; putting into context for their particular situations; etc.

This month’s issue of Mayo Clinic Proceedings has two interesting studies and an insightful editorial (”Medication Literacy Is a 2-Way Street”) that highlight why information therapy (Ix) is so valuable at the end of a hospital stay.

Kripalani et al found that, for patients with limited literacy skills discharged for acute coronary syndrome, 22% had not filled their prescriptions and 21% had difficulty understanding the purpose of the drugs prescribed to them. Maniaci et al studied well-educated patients discharged from an internal medicine hospital ward with at least one new medication prescribed. This study found that, 1-2 weeks post-discharge, 14% were unaware of being given a new medicine. Much worse were the percentages of patients that could recall the name (64%), dosage (56%) or purpose (64%) of the drugs.

It’s clear that providers are not doing an adequate job of ensuring that patients are leaving the hospital with the information they need to manage their recovery effectively. But it’s largely not due clinician error; rather, it’s that little has been done to integrate that information transfer into the care delivery process–especially at critical moments in care such as the discharge process.

That’s why Ix is so critical to ensuring that discharged patients can recover to better health and reduce the chances of being readmitted. Innovative Ix leaders from around the country will be sharing best practices on how to change care delivery to meet patients’ information needs at the 7th Annual Conference. Please join us June 12-13 in Washington, DC to get engaged in this critical element of patient-centered care delivery redesign.

An Associated Press story published today highlights a new CMS (the federal government agency that administers Medicare and Medicaid) advertising campaign to improve quality and transparency for US hospitals. This marks the first year that CMS has publicly released HCAHPS data on hospital patients’ experience with care.

The HCAHPS (Hospital Consumer Assessment of Health Providers and Systems) survey may begin to build a business case for hospitals to focus more intently on delivering more patient-centered care and information therapy (Ix). NCQA’s (National Committee for Quality Assurance) HEDIS public reporting efforts have dramatically improved health plan performance on a range of quality indicators, and CMS is optimistic that its Hospital Compare tool can do the same for hospitals.

Several HCAHPS questions have the potential to drive Ix and patient-centered HIT initiatives in the inpatient setting. Most notably:

• How often did nurses explain things in a way you could understand? (Q3)
• How often did doctors explain things in a way you could understand? (Q7)
• Before giving you medicine, how often did hospital staff tell you what the medicine was for? (Q16)
• Before giving you medicine, how often did hospital staff describe possible side effects in a way you could understand? (Q17)
• Did you get information in writing about what symptoms or health problems to look out for after you left the hospital? (Q20)

There are other important market drivers of inpatient Ix. JCAHO has existing standards that reinforce the need for Ix, and hospitals have reported to the IxCenter that JCAHO reviewers have been more strongly emphasizing the need to document Ix delivery. Specifically, the Comprehensive Accreditation Manual for Hospitals (CAMH) includes 12 references to atient education as services that JCAHO expects hospitals to instruct patients on during their hospital stay. Among the most relevant patient education items in JCAHO are:

• LD.3.15 – patients admitted to a temporary location must have rights and access to services
• LD.3.120 – leaders plan and support patient education
• PC.6.10 – patient receives education and training specific to patient’s needs
• PC.6.30 – patient receives education and training specific to patient’s abilities

The issue of “aligning incentives” and creating market rewards for Ix is one of the topics that we will be addressing June 12-13 at the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care” at the Newseum in Washington, DC.