Certainly one of the best ways we have to assess patient-centered care is to ask consumers about their own experiences via scientific surveys. As I noted last week about Medicare publicly releasing HCAHPS data on patient experiences with hospital care, health care’s powers that be are emphasizing patient-reported data more than ever.

URAC has just released for public comment a new case management patient satisfaction tool, which is an important step forward in driving a patient-centered approach to delivering those services. Much of the tool is good.

Question #7 could be strengthened by drawing out more specific input from patients about the kind of information that helps people manage their care. It asks patients to rate agreement with the statement, “My Nurse/Case Manager provided verbal and/or written information that helped me reach my goals.”

We should have an expectation that case managers employ more than just live, oral communication to help people reach their goals. For that reason, the “or” is inadequate.

In some cases, however, “written” may not be sufficient either, given that it implies text. For some people, graphics, video, or audio may be more effective media. Perhaps most importantly, it should be information that the patient can save and refer to at his or her convenience.

Although the wording may still need work, better language to address patient-centered communication needs would be, “My Nurse/Case Manager provided information in a form that I could understand, access when I needed it, and helped me reach my goals.”

One thing that’s clear from a new study by Jack Fowler in this week’s JAMA is that hospital patients’ experience with care is unrelated to health care expenditures. Given how much we spend on health care in the US, we ought to figure out how to make it positively affect consumers’ experiences.

At our 7th Annual Ix Conference, “Next-Generation Patient-Centered Care,” we will address patient-centered communication and the incentives to encourage it from multiple angles. You can still register for this unique event in Washington, DC June 12-13.

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.

Will the biggest disruption in health care be an Internet-based health care industry? We already know that more consumers get answers to their health care questions on a daily basis from the Internet than from their doctors. But do we think that online tools will evolve enough to allow consumers to organize and make sense of that information without trained professionals?

Will the trend toward “convenience care” (pharmacy- or mall-based walk-in clinics) have the greatest impact on how providers organize care delivery? Will they need to re-think the way they practice medicine to meet new consumer expectations?

Maybe CMS’s requirement that hospitals begin publicly reporting patient experience data in 2008 will forever change how hospital view patient-centered care. Will hospitals finally find that being truly patient-centered has a business ROI?

Will consumer control over their own health information via personal health records (PHRs) alter the historical information asymmetry and allow them to control their own health care lives? What needs to be done to make sure that PHRs actually fulfill their potential as a disruptive force given that personal health data availability by itself will have a marginal impact?

Will the evolution of electronic health records (EHRs) and a robust interoperable health information exchange dramatically change health care by increasing connectivity among systems, providers, and others? Or, will we just create a process for transferring 1’s and 0’s on top of poor models of health care delivery?

Will the boom in biomonitoring/wireless devices (the so-called “healthcare unbound” space) revolutionize health care by allowing consumers to access the health care they need anytime, anywhere, and any way they want it?

Maybe the answer lies in more ubiquitous technologies. Could expanded use of cell phones and the application of tailored automated telephony allow us to reach a broader audience more conveniently, thus increasing the likelihood that average consumers will be more activated about their health care needs?

Can we more effectively engage consumers in better managing their own health by learning from Hollywood or video games about how to draw people in through entertainment? By doing so, can we make health care “fun” or at least truly engaging?

Can we find new payment structures to eliminate the perverse incentives that plague our current health care delivery system? Or, will people find ways to game any new system we design…or will entrenched interests simply prevent new systems from coming into fruition?

Is there any hope at all for finding a way to cover the growing number of uninsured in the country given the politically changed environment in Washington?

What is the role of information therapy (Ix) in each of these potentially disruptive forces?

Which of these developments will have the biggest impact on health care? Beyond that, will any of them actually change a system that has so many challenges and problems?

Many of these questions will be tackled at our upcoming Ix conference October 8-10 in Park City (see http://guest.cvent.com/EVENTS/Info/Agenda.aspx?e=f586de48-3d6e-4064-8543-1c7037b58890 for the full conference agenda). I hope you’ll join us.

–Josh

In response to a column in The New York Times last week (http://www.nytimes.com/2007/05/24/fashion/24Cyber.html), I wrote the following letter to the editor (for which they apparently aren’t publishing any letters):

Regarding “Visits to Doctors Who Are Not in, Ever” (May 24), democratization of information has made health content widely available—some would describe this a blessing and others a curse. The question is how do we steer people to information that is accurate, comprehensive, relevant, understandable, and useful?

Empirical research we’ve conducted on diabetes Web sites suggests that the guidance offered by most “experts”—such as a “trustworthy” sponsor, the currency of the content, or the process for updating it—provides little insight into the content’s actual accuracy or comprehensiveness.

Innovative collaborative filtering approaches can be effective, but they also have limitations—in part due to the complexity of medical science and its pace of change. Objective, systematic instruments now exist that could be scaled to provide critical guidance to consumers. These two approaches can complement each other and help people navigate life-and-death matters for themselves and their loved ones.

Since I get more than 150 words here, I’ll expand a bit…. First some quick background: The research I refer to is summarized in a white paper on “The Mysterious Maze of the World Wide Web” on the www.ixcenter.org Web site and the more scientific papers are available from the peer-reviewed Journal of Medical Internet Research (www.jmir.org).

It’s reasonable to approach the evaluation of Web site information quality like many other scientific questions where the answers (to “what is high-quality content?”) are not always straightforward. We can triangulate by using multiple methods to answer the question.

Specifically–and as I proposed in the original research–we can combine three kinds of measurement: structural measures of quality to give a generic content threshold test; performance measures of accuracy and comprehensiveness for specific conditions; and assessment of consumers’ perspectives on content in terms of functionality, understandability and overall utility.

In my original work (before the “Health 2.0″ space existed) , I had envisioned this being done more though random consumer survey methods, but the collective filtering approach is considerably more efficient, even if less scientific.

Bringing these different strategies together will provide everybody with a lot more guidance about health information quality, the first ingredient for good information therapy.

–Josh

We held a public webcast on this topic today. Susannah Fox, Associate Director of the Pew Internet Project, not only shared valuable insights but also some of Pew’s as-yet-unpublished data. The presentations and the audio recording from both of our presentations will be available on our Web site in the near future.

We had nearly 100 unique logons to the webcast and more than 25 questions, so we didn’t have time to answer all of them. Over the next few days, I’ll try to answer questions we didn’t get to and elaborate on a few that I have been thinking about for various reasons. Also, Susannah Fox will post comments on this blog (as time allows) as well…although I’m sure that you’ll need to tune in to her upcoming Pew reports (available at www.pewinternet.org) to get all her insightful thoughts.

Q: Why can’t we have a way for doctors to upload my personal health records to a private page on a social network site that I can then share with other providers or people in my community?

JJS thoughts: This is a great idea, and clearly an activity that would support a much more collaborative care environment that would help improve (to paraphrase Dartmouth’s John Wasson) “same-page care” (getting clinicians and their patients on the same page). Unfortunately, there has been little progress in this arena outside of some integrated delivery systems (perhaps Group Health Cooperative in Seattle being the most advanced example). Some of the organizations that Wasson works with through a couple of innovative initiatives (see www.howsyourhealth.org and www.idealmicropractice.org) are getting at this in different ways as well.

No doubt part of the reason is that an infrastructure doesn’t exist to support it, and we’re working on two aspects of that infrastructure. First, we need to address the consumer-facing side of IT interoperability so that we can effectively connect consumers to health content that they can make sense of. I wrote an Issue Brief for the California Health Care Foundation about this issue (see “Lost in Translation: Consumer Health Information in an Interoperable World” at http://www.chcf.org/topics/view.cfm?itemID=114624).

The second infrastructure piece that we are trying to address is the payer side of the equation by creating technical specifications to define what constitutes Ix. The goal of our Ix Payer Workgroup is to provide guidance to pay-for-performance, provider recognition, and other programs so that they can recognize when providers, organizations, or tools provide people with information that supports their information needs with respect to decision support, behavior change, or other health needs.

I’ll address other questions tomorrow and in the days ahead.

–Josh

Since research* suggests that 50% to 80% of everything that a patient hears in the doctor’s office has been completely forgotten by the time he or she gets home, it remains remarkable to me that payers don’t require an Ix after-visit summary as a condition for reimbursing clinical encounters.

For reasons such as this, the inherent logic in Ix is so compelling from both a practical and moral standpoint for many of us. However, most of the payer community is not ready to accept that logic without a substantial body of research behind it—not that any empirical evidence exists for the value of the generic clinical encounter itself.

To be fair, we first need to define in specific terms what constitutes Ix if we think that the market should recognize it. Indeed, that is the first task before the new Ix Payer & Certification Issues Workgroup, which was launched at the end of November as part of the IxAction Alliance.

The workgroup is chaired by Eleanor Herriman, MD (Chief Science Officer of Boston-based NorthPoint Domain) and includes a diverse cross-section of organizations. The Ix Payer Workgroup not only recognized this definitional need, but also realized that not all Ix is created equal—it varies both by type and level of complexity—and therefore has embarked on the more ambitious agenda of developing an Ix taxonomy.

As we build the infrastructure for identifying when and how Ix is performed, we also need to continue to build the empirical evidence base for Ix to demonstrate the value that high-quality Ix brings to people’s health. That work is also a critical part of the IxCenter’s 2007 agenda.

One of the challenges in measuring the impact of the latest Ix innovations is that the leaders often don’t have time to design rigorous, prospective studies. They just forge ahead and innovate because they know it’s the right thing to do for their patients, members, or consumers.

That poses challenges to health services researchers (and I admit to being one myself :-)), who generally would prefer to have things evaluated more cleanly or traditionally. It’s harder to tease out cause and effect when studying innovation that transpires organically or as part of lean operational development processes.

However, we should not shy away from the empirical idiosyncrasies that innovative care delivery initiatives create. Rather, we should rise to the challenge by employing a broader set of research and analytical skills to tackle these compelling research questions about new innovations. Indeed, the new care delivery strategies create opportunities for health services researchers to develop their own innovative research techniques.

I hope that health services researchers out there are up to that challenge.

–Josh

*For references on this and related research, see the IxCenter’s white paper, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm,” which you can download from the Publications section of IxCenter’s Web site (www.ixcenter.org).