Molly Coye (CEO of the Health Technology Center) and Joe Kvedar (Director of Partners’ Center for Connected Health) made a compelling argument for patient-centric health care reform on the Health Affairs Blog yesterday. Coye & Kvedar effectively articulate the rationale and importance of ensuring that our best shot at health care reform in many years improves the care delivery system by focusing on consumers’ health and health care needs. What would have made the piece even more helpful is if they tied that argument more directly to what’s actually going on in Washington, both on the legislative front and in implementation of the American Recovery & Reinvestment Act (ARRA).

Coye  & Kvedar “propose adding two synergistic goals to the policy conversation:

1. Support people in taking shared responsibility for their health outcomes, and make tools available to help them.
2. Pay providers for success in supporting patient self-management, and for preventing the onset or exacerbation of disease, rather than for units of service.”

I completely agree. Although many policy leaders still don’t understand these important points, it’s important to identify where progress has been made and think about how to build on those efforts.

For example, in the implementation of ARRA, the first draft definition of “meaningful use” of health information technology (HIT) includes several patient-centric expectations in order for providers to be rewarded the tens of billions of dollars in incentives in ARRA offers for HIT implementation. If implemented (and strengthened modestly), this approach could have a significant impact on achieving (in Coye/Kvedar’s words) “important transformation of the care delivery process itself, so that patients are fully integrated and in many cases manage their care for prolonged periods with little interface with the physician.”

ARRA also allocated $1.1 billion for comparative effectiveness research (CER). If the CER agenda evolves with five consumer-oriented principles in mind, it has the potential to dramatically improve care delivery effectiveness by providing useful information to consumers and clinicians. The release of the Institute of Medicine’s top 100 priorities for CER provides at least some indication that CER leaders recognize the importance of using these resources to advance patient-centered care.

Although most of the media attention and public debate around health care reform legislation has focused on ideological issues, there is quieter, important work going on with respect to delivery system reform that could pave the way for more patient-centered care delivery. If, for example, the Wyden-Gregg patient decision aids legislation gets integrated into the broader reform bill (and legislators can overcome their ideological divisions and pass something), that could be an important step in the direction of a more rational payment system that encourages information therapy (Ix) — patient-centered care, shared decision making, and participatory medicine. Other important delivery system reforms could be integrated into the final legislation, and I completely agree with Coye & Kvedar that we need to “wrap these concepts [and what they call ‘patient-provider communications tools’] into the implementation of the patient-centered medical home projects and demonstrations.”

It’s important that industry leaders like Coye and Kvedar continue to advocate for achieving patient-centric health care reform. It’s equally critical that we collectively identify practical strategies for integrating those arguments into the development of new bills and the implementation of recently passed legislation.

The Institute of Medicine (IOM) released its list of the top 100 topics that should be addressed in comparative effectiveness research (CER) now — thanks to $1.1 billion in the American Recovery & Reinvestment Act — that the federal government actually has the resources to do substantial CER. IOM has prioritized the list by creating four quartiles, noting that the first quartile is the highest priority group, etc.

In order for the federal government to make good use of the huge pot of CER money, there are at least five things that they need to do to ensure its value and actually change care delivery. I’m all for trying to find out whether me-too drugs add any significant value. However, the greatest opportunities for implementing delivery system change that improves care effectiveness and efficiency relate to innovations in how care is organized and delivered, and how insights are communicated to the broad range of health care actors — most notably consumers.

That’s why I was heartened by the IOM’s top 100 list — though certainly I’d move a few up a quartile or two. The list has many projects that fit my priorities, including a strong emphasis on CER to reduce health disparities.

Here are some examples of potentially valuable CER projects in the first quartile:

• Compare the effectiveness of dissemination and translation techniques to facilitate the use of CER by patients, clinicians, payers, and others.
• Compare the effectiveness of comprehensive care coordination programs, such as the medical home, and usual care in managing children and adults with severe chronic disease, especially in populations with known health disparities.
• Compare the effectiveness of interventions (e.g., community-based multi-level interventions, simple health education, usual care) to reduce health disparities in cardiovascular disease, diabetes, cancer, musculoskeletal diseases, and birth outcomes.
• Compare the effectiveness of literacy-sensitive disease management programs and usual care in reducing disparities in children and adults with low literacy and chronic disease (e.g., heart disease).

And those in the second quartile that really should be moved up:

• Compare the effectiveness of shared decision making and usual care on decision outcomes (treatment choice, knowledge, treatment-preference concordance, and decisional conflict) in children and adults with chronic disease such as stable angina and asthma.
• Compare the effectiveness of strategies for enhancing patients’ adherence to medication regimens.
• Compare the effectiveness of patient decision support tools on informing diagnostic and treatment decisions (e.g., treatment choice, knowledge acquisition, treatment-preference concordance, decisional conflict) for elective surgical and nonsurgical procedures—especially in patients with limited English-language proficiency, limited education, hearing or visual impairments, or mental health problems.
• Compare the effectiveness (including resource utilization, workforce needs, net health care expenditures, and requirements for large-scale deployment) of new remote patient monitoring and management technologies (e.g., telemedicine, Internet, remote sensing) and usual care in managing chronic disease, especially in rural settings.

Some from the third quartile that definitely could be prioritized higher:

• Compare the effectiveness and cost-effectiveness of conventional medical management of type 2 diabetes in adolescents and adults, versus conventional therapy plus intensive educational programs or programs incorporating support groups and educational resources.
• Compare the effectiveness of alternative redesign strategies—using decision support capabilities, electronic health records, and personal health records—for increasing health professionals’ compliance with evidence-based guidelines and patients’ adherence to guideline-based regimens for chronic disease care.
• Compare the effectiveness of different quality improvement strategies in disease prevention, acute care, chronic disease care, and rehabilitation services for diverse populations of children and adults.
• Compare the effectiveness of different strategies to engage and retain patients in care and to delineate barriers to care, especially for members of populations that experience health disparities.

And finally some from the fourth quartile that I also think deserve higher ranking:

• Compare the effectiveness of different techniques (e.g., audio, visual, written) for informing patients about proposed treatments during the process of informed consent.
• Compare the effectiveness of different disease management strategies for activating patients with chronic disease.
• Compare the effectiveness of different delivery models (e.g., home blood pressure monitors, utilization of pharmacists or other allied health providers) for controlling hypertension, especially in racial minorities.

These examples are not meant to be an exhaustive accounting of all the worthy projects proposed by the IOM. There was considerable attention to re-thinking the locus of care delivery — that is, evaluating the comparative effectiveness of emphasizing care that transpires outside traditional health care delivery settings. It’s also important to note that there are also a number of projects on the list that specify the need to assess CER using patient-reported outcomes.

I’m looking forward to the evolution of the CER agenda.

A multinational, multidisciplinary team apparently has won $1 million for improving the algorithms that Netflix uses to recommend movies to its users. The winning team — which includes statisticians, computer engineers and machine learning experts from the US, Austria, Israel and Canada — developed a program that improves the accuracy of movie recommendations by more than 10%.

Ix innovation design is a new focus for the Center for Information Therapy, in part through our collaboration with IDEO and the California HealthCare Foundation. We are eager to identify more robust methods for driving breakthrough innovations in patient-centered HIT applications.

For years, I’ve wondered why we see so few examples in the health care world of the Netflix or Amazon approach to guiding consumers to the information that they want. A huge success factor in information therapy (Ix) is the degree to which information prescribing can develop algorithms that effectively translate individual pieces of data into information triggers. The more data we can collect and efficiently transfer through electronic infrastructure and the more information derived from the consumers themselves, the greater the chance that we can prescribe or deliver the right information to the right person at the right time.

Netflix knows what movies I request and often how I rate them. They also ask me (in a very quick, convenient way) to rate other movies that I’ve seen. They put these data points together and somehow electronically try to make sense of someone who loved “The Killing Fields” and “This Is Spinal Tap,” but who was not enamored with “The Matrix.” They seem to do a reasonably good job, and perhaps this new program that was developed by the interdisciplinary team will deliver better movie recommendations to me.

That’s all fun, but it’s not my health — or my family’s health. There, the stakes are higher, and the information needs are several orders of magnitude more complex.

In trying to meet that need and challenge, the X-Prize Foundation has developed a health care competition, putting $10 million on the line. Unlike Netflix, however, this isn’t all about 1’s and 0’s. Changing the way health care is delivered involves a lot more than modeling scenarios on a computer.

That said, we can probably borrow a lot from the computer engineers, statisticians and machine learning experts and transfer those learnings to Ix innovation. To do so, however, we need those experts to join forces with clinicians, patients and ethnographers/anthropologists in order to make sure that what we learn has meaning for consumers and can be embedded into the clinical workflow.

As I wrote last week, HHS’s Office of the National Coordinator (ONC) for Health Information Technology (HIT) and the HIT Policy Committee advising it have made substantial progress in defining “meaningful use” (MU) of HIT. Comments on ONC’s first draft MU definition are due today, and the IxCenter has been working in collaboration with many other consumer-oriented organization through the Consumer Partnership for eHealth (CPeH). The Center for Information Therapy enthusiastically supports the CPeH input, which has been spearheaded by Eva Powell and Christine Bechtel from the National Partnership for Women & Families.

First, it’s important to be clear about what the tens of billions of dollars in the American Recovery & Reinvestment Act (ARRA) for HIT incentive were designed to promote. The legislation made it clear that taxpayers didn’t want to pay providers for “flipping a switch” to turn on an HIT system. American taxpayers want their money to be spent on “meaningful use” of HIT that improves the quality and efficiency of care delivery. So, CPeH frames the issue with the following statement:

“HIT is an essential tool for providing patient-centered care, and therefore the definition of its meaningful use should be patient-centered, reflect a clear, stepwise approach for workflow redesign and should signal, from the outset, a bold shift in the culture of health care.”

That framing is important. It also reflects, at least to some degree, ONC’s starting point with its June 16 draft definition. Building on this approach, there are some important areas in which CPeH believes the MU draft definition can be strengthened. I will outline a few of the key points below, and provide some commentary of my own. The full comments of CPeH include considerably more detail.

“The objectives and measures should be linked more clearly to the ultimate goal of improving health outcomes and the efficient use of health care resources, and be verified in robust ways.”

By tying each goal to a patient engagement component of meaningful use, we can guide MU of HIT to whether it delivers meaningful, useful information to patients and families. We should measure things that directly matter to consumers in terms of their functional status and experience with care, and we stratify measurement by gender, race, ethnicity, and primary language spoken to determine MU is achieved for all populations.

“Care coordination should be emphasized as a top initial priority for meaningful EHR use.”

It’s important that MU of HIT not lead only to good silos of information distribution, but rather allow for the efficient exchange of meaningful information. Health information exchange (HIE) can reduce fragmentation of the delivery system and facilitate effective care coordination if meaningful information can be transferred not only among providers but also to and from consumers. After-visit care summaries for clinicians and patients are a critical piece of this care coordination.

“Patient engagement must be fully integrated into all aspects of health care delivery through the innovative use of technology.”

We must ensure consumers access to information in a way that they can understand and use it. That information needs to provide decision support and assistance in managing health behaviors for prevention and chronic care self-management. MU of HIT also should facilitate better communication among clinicians and patients to encourage participatory medicine. And HIT systems should allow inputs from all relevant actors, certainly including data and information deriving from the consumers themselves.

“Information about patients’ experience of care should be collected and used for improvement….We recommend that steps toward this goal should be taken in 2013, not delayed until 2015.”

Measuring consumer experience of care is central to what MU of HIT is all about.

Today is the last day for providing comments to ONC on the first draft of its MU definition (see here for instructions). As the iterative process of defining MU develops, we’ll continue to follow and update here on this blog.

As a marathoner, I’ve been known to throw a few running metaphors around, so I take note when others do as well. If some journalists and bloggers are right, it appears that the fate of health care reform may depend on what happens when legislators hit the proverbial “Wall.”

In today’s New York Times, David Herszenhorn (in “Baucus Grabs Pacesetter Role on Health Bill”) builds off Senator Max Baucus’s history with ultramarathoning in explaining the mammoth legislative battle of health care reform.

“In many ways, the push to overhaul health care is a legislative ultramarathon. And however improbable it might seem, Mr. Baucus, son of a rancher and great-grandson of a member of the Cowboy Hall of Fame, is setting the pace.”

Herszenhorn concludes the piece with a parallel between the pain and endurance required for both marathoning and health care reform, citing comments of OMB Director Peter Orzag:

“Mr. Orszag, who has agonized over health care costs for years, noted the Montana senator’s penchant for pain. “I am struck,” Mr. Orszag said, “by how he describes this as fun.”

In her blog post last week, “The Week in Health Reform - Hitting a Speed Bump,” Jocelyn Guyer of the Georgetown Health Policy Institute’s Center for Children & Families, concluded with a Boston Marathon metaphor:

“We may be heading up Heartbreak Hill, but the marathon of health reform is far from over.”

I’m sure these aren’t the the first two pundits to compare the federal legislative process to a marathon, and health care has obvious connections because of the physical and mental health and challenges associated with marathoning. The arduous and grinding task of continuous strenuous effort definitely is reminiscent of the pain one endures during the course of a 26.2 mile effort on foot.

For those of us who lived through the 1993-94 health reform marathon, all the preparation appeared to make some sort of health care reform an inevitability before legislators figuratively “bonked” when they hit the Wall. The early mistakes in the health reform run eventually caught up to the Clinton administration, ultimately resulting in  a DNF (did not finish).

Now, after years more training under our collective belts, leaders appear to be well hydrated and much better prepared, having learned lessons that one can only truly understand by doing it wrong before. But many factors often crop up in a marathon that you know may transpire but still reduce you to a long slog — the blazing sun and 86-degree weather of the 2004 Boston Marathon come to mind for me. Payment reform, debate about the role of government, and new tax policy appear to be the weather front coming our way.

The key on Patriot’s Day 2004 was to keep repeating in my mind a single mantra: “Keep putting one foot in front of another.” It sure was no PR. I lost about 30 minutes that day. But I eventually got to the finish line on Boylston Street.

Whatever people think about the Chairman of the Senate Finance Committee, the story Herszenhorn tells about Senator Baucus completing the JFK 50-Miler with a gash across his forehead suggests that he has no shortage of perseverance and fortitude as he persists in the enormous undertaking of health care reform.

Let’s hope that legislators cross the finish line in the mold of Frank Shorter in 1972 or Joan Benoit Samuelson in 1984, and we don’t recreate the parable of Pheidippides along the way.

I’m announcing my support for the Declaration of Health Data Rights, which was launched today. More information is available at HealthDataRights.org. The declaration reads:

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

I support the principles of the Declaration. Clearly, to me, this is one important step (out of many) to empower consumers with information. We know, however, that being able to access clinical and administrative data is just the beginning of that process.

As I’ve written before, we need to build on data access rights to help translate data into understandable, meaningful information. Then, we have to build tools to translate good information into user knowledge. Finally, with that base, we need to create strategies for converting knowledge into behavior.

I had the opportunity to meet with Aneesh Chopra — our country’s first Chief Technology Officer — last week. The CTO serves as Associate Director of the Obama administration’s Office of Science & Technology Policy (OSTP), which “serves as a source of scientific and technological analysis and judgment for the President with respect to major policies, plans and programs of the Federal Government.” OSTP will also lead interagency efforts on a wide range of science and technology policy issues, certainly to include health information technology (HIT) in collaboration with David Blumenthal in the Office of the National Coordinator for HIT.

Chopra — whom I’ve known for years from our days together at the Advisory Board Company — is not only really sharp but very creative in thinking into the future about how technology can evolve. The opportunity is enormous, but capitalizing on it requires more than just technology development but policy planning as well. One could argue that the pace of technology advance over the last several decades arguably has outpaced our imagination, yet we haven’t harnessed those breakthroughs in the form of health care productivity or quality gains.

The New York Times Sunday Business section explored the government’s role in stimulating innovation yesterday. Steve Lohr cites Chopra’s interest in building “innovation platforms” to spur growth, but Lohr notes that there are at least nine countries that have been more aggressive than the U.S. in using government to drive innovation: Australia, Brazil, Britain, Chile, Colombia, Finland, India, Norway and Singapore.

The Center for Information Therapy (IxCenter) also has been focused recently on how stimulate more robust innovation in the field of information therapy (Ix). In some ways, this was a natural evolution of our partnership with Health 2.0, LLC, in preparing for the first-ever “Health 2.0 Meets Ix” conference we held two months ago. There, we explored (among other things) how innovative health 2.0 tools could be combined with Ix strategies to create new models for health care delivery.

We also have launched two collaborative projects with IDEO — the innovation design firm responsible for creating everything from the first Apple mouse to the Swiffer — in our search for rapid-cycle innovation in Ix strategies. Thanks to a grant from the California HealthCare Foundation, we will work with IDEO to develop Ix strategies to overcome barriers in implementing innovative consumer engagement strategies with safety-net populations in California. We will address text-messaging applications and other approaches to information prescribing.

Another experiment involves applying the IDEO model to Ix innovation design with our IxAction Alliance in its monthly webinar. In addition to trying to develop a robust model for Ix innovation design, we also are testing out whether we can apply the highly intensive in-person workshops and collective observation of users to the virtual and dispersed nature of our monthly IxInsights webinars. That has major policy planning implications in terms of the scalability and efficiency of how we stimulate innovation nationwide.

The IxCenter will be actively pursuing robust approaches Ix innovation design strategies over the coming months, and we’ll certainly be sharing everything we learn in this space. In the interim, it would be great to get suggestions and other input from readers on the best strategies for rapid-cycle, breakthrough innovation.

At the second meeting of HHS’s HIT Policy Committee today, the committee’s Meaningful Use (MU) Workgroup offered a proposal that represents some important strides forward. From an overarching perspective, we can see progress in the fact that engaging patients and families is now one of the primary four or five goals for how “meaningful use” of HIT can transform health care.

The HHS Office of the National Coordinator (ONC) for HIT distributed a matrix along with the presentation by MU workgroup co-chairs Paul Tang and Farzad Mostashari. One of the five health outcomes policy priorities is “Engage patients and families,” and the associated care goal is “Provide patients and faimiles with access to data, knowledge, and tools to make informed decisions and to manage their health.”

Interestingly, when Mostashari presented the “achievable vision for 2015,” the slide advocated for “All patients have access to their own health information.” But Mostashari said, “All patients have access to the information they need to have.” I think the latter describes a broader set of information needs and would do more to meet the health outcomes policy priority.

For the 2011 objectives, Tang stated that the MU Workgroup’s “goal is to capture in coded format and to report health information and to use that information to track key clinical conditions.” By 2013, the goal becomes “guide and support care processes and care coordination,” leaving “achieve and improve perofrmance ans support care proceses and on key health system outcomes” by 2015.

The 2011 objectives under engage patients and families:

• Provide patients with electronic copy of — or access to — clinical information (including lab results, problem list, medication lists, allergies) per patient preference (e.g., through PHR) for outpatient (OP) and inpatient (IP) care
• Provide access to patient-specific educational resources (OP/IP)
• Provide clinical summaries for patients for each encounter (OP/IP)

For 2013:

• Offer secure patient-provider messaging capability (OP)
• Provide access to patient-specific educational resources in common primary languages (OP/IP)
• Record patient preferences (e.g., preferred communication media, advance directive, health care proxies, treatment options) (OP/IP)
• Documentation of family medical history (OP/IP)
• Upload data from home monitoring devoices (OP)

For 2015:

• Access for all patients to PHR populated in real time with data from EHR (OP/IP)
• Patients have access to self-management tools (OP)
• Electronic reporting on experience of care (OP/IP)

Many of these elements derive from the document that the Consumer Partnership for eHealth developed (a process in which the IxCenter was involved), though there are some areas where some improvements in the ONC document would go a long way toward driving better care. Some of these points were made during the meeting by HIT Policy Committee member Christine Bechtel, which I voiced support for during the public comment period, and I also added some of my own (or expanded on themes raised by Christine) there and here.

• Certainly, some of the elements should be moved up — earlier in the timeline (e.g., secure messaging, patient access to self-management tools & decision support, and electronic reporting on experience of care).
• The access to electronic information needs to be “timely” (a word that should be added); timely applies both to the speed at which it is made available and the ability to get information targeted to the consumer’s particular moment in care.
• Incorporation of data generated by the consumers themselves beyond just what can be uploaded from electronic monitoring devices (per the 2013 criterion).
• There should be more attention to consumer information tools (beyond just narrowly definted personal health records) and more clarity around the kinds of tools that consumers need — not just self-management tools but also decision support tools and tools that facilitate effective & efficient communication to improve the infrastructure for participatory medicine.

Finally, although clinical summaries are mentioned in this section, there are more ways in which improving care coordination (one of the other key five goals identified by the committee along with: engaging patients and families; improve quality, safety, efficiency, and reduce health disparities; improve population & public health; and ensure adequate privacy & security protections for personal health information). Specifically, the stated care goal for “improve care coordination” is “exchange meaningful clinical information among professional health care team.” Given that, for many of the measures proposed in the care coordination section, there is substantial research to support exchanging clinical information with patients and families improves care, reduces readmissions, etc., there should be an explicit inclusion of patients & families in that exchange.

If you also would like to share your comments with ONC, instructions for doing so are here.

The Senate Health Education, Labor & Pensions (HELP) Committee released its piece of the comprehensive health care reform bill on June 9. Despite being 615 pages long, several key provisions of any health care reform legislation are not in the HELP Committee bill because they are issues that fall under the jurisdiction of the Finance Committee. Most of the issues related to Medicare, Medicaid, other public options, and taxes (basically how to pay for expanded coverage) will be proposed in the Finance bill, likely coming out next week.

But HELP is first to the table, and may start marking up this bill as early Tuesday, June 16. So it’s worth looking at the bill and asking: What key features of it facilitate more patient-centered health care delivery?

Perhaps most importantly, the provisions of the Wyden-Gregg “Empowering Medicare Patient Choices Act” (see here for overview) that fall under the jurisdiction of HELP are included in Sec. 217, Program to Facilitate Shared Decision-Making (pp. 301-311). Much of the meat of this bill (Medicare carrots and sticks) comes under the jurisdiction of the Finance Committee, but this is a critically important start.

Sec. 212. Grants to Establish Community Health Teams to Support a Medical Home Model provides several opportunities for driving patient-centered care delivery and the provision of information therapy (Ix), though much will depend on how it is implemented. Opportunities include emphasis on “payment that recognizes added value to patient in a patient-centered care; [sic]” (a few typos aren’t surprising when those Hill staffers are working round-the-clock these days). There is also a recognition that support should be provided to PCPs to “provide quality-driven, cost-effective, culturally appropriate, and patient- and family-centered health care” and “promote effective strategies for treatment planning…sharing information, treatment decision support…”

The role of Ix in patient-centered discharge planning and reducing readmissions is highlighted in both the medical home section and in Sec. 216. Reducing and Reporting Hospital Readmissions (see here for discussion of Ix role in this area). Ix and patient-centered HIT are also an important part of the solution for Sec. 213. Grants to Implement Medication Management Services in Treatment of Chronic Disease.

Admittedly, I haven’t finished all 615 pages, so I’ll probably find more in here over the weekend. If you think I’ve missed answers to my question (What key features of it facilitate more patient-centered health care delivery?), please add in the Comments section.

The latest version of the e-health bible was published today by Susannah Fox & Sydney Jones at the Pew Internet & American Life Project. For nearly a decade, many of us have relied on Pew’s data to understand consumer needs with respect to health information technology (HIT). Susannah gave a sneak preview of some of Pew’s new data at our April “Health 2.0 Meets Information Therapy Conference,” but there’s nothing quite like getting to sink your teeth into 70 pages of Pew data.

Some of what’s most interesting is what has changed in the last 8 or 9 years. In recent conversations I’ve had about Healthy People 2020 or other prognostications about the next decade of HIT developments, we sometimes forget how quickly the world changes technologically speaking. Comparing Pew’s 2000 data to Nov-Dec 2008 sample of American adults:

• Internet access: Jumped from 46% to 71%
• Looking online for health information: Jumped from 25% to 61%
• Broadband access: Jumped from from 5% to 57%

Just as importantly, however, there’s a little bit of plus ça change, plus c’est la même chose. Despite the growing popularity of the Web, more people turn to a health care professional (86%) and a friend or family member (68%) than the Internet (57%).

Perhaps what I’ve always found most important about the Pew data is understanding the impact of the Web on how consumers make health decisions. After all, if a Google search falls in the forest and nobody does anything with the tree they downloaded, has it really made a difference?

Indeed, Pew data demonstrate that the information found on the Internet does influence decision making for a majority of consumers who go online. Of those people:

• 60% say the information found online affected a decision about how to treat an illness or condition.
• 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.
• 53% say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.
• 49% say it changed the way they think about diet, exercise, or stress management.
• 38% say it affected a decision about whether to see a doctor.
• 38% say it changed the way they cope with a chronic condition or manage pain.

And, on the critical “help or hurt” question, 60% of online health users say they or someone they know has been helped by following medical advice or health information found on the Internet, in contrast to just 3% who say it has caused harm. The former figure has nearly doubled since 2006, whereas the latter has stayed the same.

I’m not disappointed (but not surprised) that consumer engagement tools seem to not have done a great job so far. Only 19% of online health users have signed up to receive updates about health or medical issues. We clearly need to do a better job of meeting people where they are at in order to get them more engaged in online management of their health.

Finally, for understanding the impact of demographics on Americans’ use of the Internet, broadband, and cell phones, there’s nothing that tells the story as well as Pew’s access thermometers, which have now been updated with December 2008 data.

(Methodology Sidebar: Pew — in part made possible by its partnership with the California HealthCare Foundation — deserves special credit for two methodological advances. First, Pew now surveys (I think they added this a year or two ago) using both landline and cell phone samples, recognizing that an increasing and unevenly distributed portion of the US population cannot be reached by landline (this issue got a lot of press — particularly from places like Pollster.com and 538.com — during the 2008 presidential primaries and general election, as many thought that could lead to underestimations of the Obama vote). Second, they did Spanish-language interviewing to capture information from the second most prevalent language spoken in the US. This substantially improves the validity of all of Pew’s demographic comparisons that involve Latinos.)

Thanks to Pew for continuing to facilitate a data-driven conversation about consumer behavior with respect to the Internet.