The U.S. Agency for Healthcare Research & Quality (AHRQ) has just released a thorough literature review of the “Impact of Consumer Health Informatics Applications.” The report, prepared by the Johns Hopkins Evidence-based Practice Center and led by Chris Gibbons, is part of AHRQ’s evidence report/technology assessment series.

Gibbons et al concluded that “available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.”

The abstract is below and can be accessed here and has a link to the full 500+-page report.

Objective: The objective of the report is to review the evidence on the impact of consumer health informatics (CHI) applications on health outcomes, to identify the knowledge gaps and to make recommendations for future research.

Data Sources: We searched MEDLINE®, EMBASE®, The Cochrane Library, Scopus™, and CINAHL® databases, references in eligible articles and the table of contents of selected journals; and query of experts.

Methods: Paired reviewers reviewed citations to identify randomized controlled trials (RCTs) of the impact of CHI applications, and all studies that addressed barriers to use of CHI applications. All studies were independently assessed for quality. All data was abstracted, graded, and reviewed by 2 different reviewers.

Results: One hundred forty-six eligible articles were identified including 121 RCTs. Studies were very heterogeous and of variable quality.

Four of five asthma care studies found significant positive impact of a CHI application on at least one healthcare process measure.

In terms of the impact of CHI on intermediate health outcomes, significant positive impact was demonstrated in at least one intermediate health outcome of; all three identified breast cancer studies, 89 percent of 32 diet, exercise, physical activity, not obesity studies, all 7 alcohol abuse studies, 58 percent of 19 smoking cessation studies, 40 percent of 12 obesity studies, all 7 diabetes studies, 88 percent of 8 mental health studies, 25 percent of 4 asthma/COPD studies, and one of two menopause/HRT utilization studies. Thirteen additional single studies were identified and each found evidence of significant impact of a CHI application on one or more intermediate outcomes.

Eight studies evaluated the effect of CHI on the doctor patient relationship. Five of these studies demonstrated significant positive impact of CHI on at least one aspect of the doctor patient relationship.

In terms of the impact of CHI on clinical outcomes, significant positive impact was demonstrated in at least one clinical outcome of; one of three breast cancer studies, four of five diet, exercise, or physical activity studies, all seven mental health studies, all three identified diabetes studies. No studies included in this review found any evidence of consumer harm attributable to a CHI application.

Evidence was insufficient to determine the economic impact of CHI applications.

Conclusions: Despite study heterogeneity, quality variability, and some data paucity, available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.

The IxCenter, IDEO and the California HealthCare Foundation (CHCF) have just published a new report, “Innovating with Information Therapy (Ix): Prompting Transformational Change with Safety-Net Populations.” The report represents our findings and learnings from a collaborative project between the IxCenter and IDEO with funding and guidance from CHCF, as well as input from several experts and physicians who serve safety-net populations.

The project had two primary goals:

1. Identify and illustrate new information delivery mechanisms that prompt patients to improve their self-care behaviors.
2. Help safety-net organizations understand how prototyping methodologies can increase the efficiency of implementing new ideas.

One of the first things that we did was to learn directly from consumers themselves through ethnographic observation and structured consumer interviews. From there, we reconvened as a group to do storytelling and share insights we gained from consumers. The process then shifted to a group exercise of generating themes and how-might-we statements.

The second day began with intense brainstorming, followed rapid prototyping in which we develop what IDEO calls “10-dollar, 10-minute” prototypes. The idea was to actually develop something concrete and then we presented these prototypes to three people who live with chronic conditions. Before building out more fully, it’s critically important to get direct feedback from the target audience for your innovations.

Far more detail about what we learned and what we developed can be found in the report. We look forward to lots of feedback on our findings, and suggestions for where we might take this work next.

Jon Gabel from the National Opinion Research Center has an excellent op-ed piece in today’s New York Times. The basic argument is summarized in his conclusion:

“The Congressional Budget Office’s integrity is beyond questioning. But the record shows that it has substantially overestimated the cost of health care reform three times out of three. As Congress now works on its greatest push for reform in generations, the budget office needs to revise the methods it uses to make predictions about costs.”

Far from being an arcane methodological debate, CBO’s approach has profound consequences for health care reform and for the long-term health and economic conditions of the country. As Gabel puts it:

“The budget office’s cautious methods may have unintended consequences in the current health care reform effort. By underestimating the savings that can come from improved Medicare payment procedures and other cost-control initiatives, the budget office leads Congress to think that politically unpopular cost-cutting initiatives will have, at best, only modest effects. This, in turn, forces Congress to believe it can pay for reform only by raising taxes, which then makes reform legislation more difficult to pass.”

The reason that CBO has underestimated savings from past reforms of Medicare is that it makes the assumption that — without convincing empirical evidence of an initiative’s cost impact — it basically “scores” it as delivering zero savings. No doubt that CBO is consistent and conservative, but that doesn’t necessarily produce the most accurate budgetary forecast.

Perhaps more so than any other area in the federal budget, there are an enormous number of unknowns in health care. CBO has historically built its model on the premise that absence of evidence equates with evidence of absence.

But there is a major distinction. “Evidence of absence” means that we have an empirical reason to believe that there is no effect of an intervention (in this case on cost). In that case, it makes sense to score zero savings.

In contrast, “absence of evidence” simply means that we do not have sufficient evidence that an intervention produces any effect.  The problem is that, by definition, any true “innovation” (defined by Merriam-Webster as “the introduction of something new”) has no evidence. Which is to say: CBO has effectively ruled out scoring savings for true innovation.

Perhaps some would argue that’s an overstatement in that we certainly commonly use the term innovation to describe something that has been around long enough to be tested. Yes and no. There’s no doubt that new and innovation are relative terms, but there are still important reasons why that approach for CBO remains flawed.

First, evaluation takes time. To design a study, appropriately manage it, collect and analyze data, submit to peer review, and publish often takes many years.

Second, the level of evidence that CBO typically requires takes A LOT of time.

Third, innovation often comes from combining different initiatives and strategies that create a combined effect greater than the sum of their parts. Information therapy, patient decision aids, comparative effectiveness research, and other delivery system reforms may have a powerful impact when thoughtfully and appropriately combined together.

Fourth, the pace of innovation and the greatest innovative impacts can be dramatically robust. There is no way, in its current model, for CBO to capture those things that will have the most important effects on the federal health budget.

Like Jon Gabel, I don’t question the CBO’s integrity or analytical capacity, but I do believe that its methodological approach requires amendment. As I have written before, we — as health services researchers (and I admit to being one myself) — need to maintain our analytical rigor while being as creative in our research methods as the innovators are at innovating.

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.

If we aren’t, we will continue to create perverse public policy incentives.

For those of us parents with twins, we strive to prevent our homes from being natural laboratories for studying our children. Sometimes, it’s hard to overlook.

When my twins were toddlers, they often — like toddlers in general — were playing in the same space but not playing together. In child development lingo, that’s called “parallel play.”

For toddlers, parallel play is a natural phenomenon and nothing to worry about. However, when that term needs to be deployed to describe the communication between clinicians and patients, it’s time to shout, “Houston, we have a problem!” Parallel play in the clinician-patient relationship represents the antithesis of “participatory medicine.”

Thanks to Jane Sarasohn-Kahn at the Health Populi Blog, I came across new data from Harris Interactive that examined — among other things — whether patients share what they find on the Web with their doctors. When asked in 2007, 42% of consumers responded that they “never” share their online health info with their physicians; by 2009, that percentage rose to 56%. Yikes!

We also know from Pew Internet Project data that consumers’ number-one preferred source of health information is their docs, so we have to presume that this hidden Web information is not a desired situation from patients’ perspectives. Barriers to sharing information probably include some combination of: lack of adequate time; poor systems to facilitate information prescribing and exchange; and fear that doctors will not respond positively to the information consumers bring into the conversation from external sources.

The Internet should be a tool that helps elevate the level of discussion between clinician and patient, and it can be. Clinicians and delivery systems that have developed systems and infrastructure to facilitate information therapy (Ix) ensure that Web health information is built into the care delivery process. That facilitates better continuity of care and lays the groundwork for more holistic approaches to care delivery such as a truly patient-centered medical home.

Sarasohn-Kahn suggests that the recession may be part of the reason for this increase in parallel play, and she may very well be right. But whatever it is, it’s likely to exacerbate an already-fragmented care delivery process and lead to worse care for consumers unless we build more Ix infrastructure into the system.

Over the last decade or two, Kaiser Permanente has done such a good job at managing coronary artery disease (CAD) that it is no longer the number-one cause of mortality for Kaiser members. Last week, a number of media covered a Kaiser CAD management success story that was presented at an Alliance for Health Reform forum in Washington, DC.

This particular intervention, the Collaborative Cardiac Care Service (CCCS), is a multidisciplinary approach developed by KP’s Colorado region and summarized in an article in Summer 2008’s The Permanente Journal. It achieved dramatic improvements in care management, including:

• Improved cholesterol screening (increasing from 55% to 96%)
• Improved LDL control to <100 mg/dL (jumping from 22% to 77%)
• Reduction in all-cause mortality associated with CAD by 76%
• High patient and physician satisfaction

The CCCS intervention was extensive, involved a wide range of clinicians, and integrated existing chronic care management strategies with its new HealthConnect electronic infrastructure. What is also clear is that it relied on a wide range of information therapy (Ix) principles and strategies.

• CCCS made considerable use of information triggers to determine which Kaiser members to target, the particular information needs of each member, and when to prescribe the Ix.
• Critical components of CCCS involved the timely prescription of evidence-based information to Kaiser members — everything from smoking cessation to medication adherence and from testing reminders to diet & exercise education.
• CCCS also integrated different forms of Ix — many data elements collected through HealthConnect produced system-triggered information prescriptions, but they also had clinician-prescribed Ix from physicians, nurses, pharmacists, and counseling/educator experts. (I’m not sure whether the intervention specifically included consumer-prescribed Ix as well — e.g., information prescribing from other members in peer groups such as in group visits, social networks, etc.)

Ix interventions like this likely will not only improve care quality and reduce costs, but will lead to engaged and empowered consumers, like the Kaiser member described in the recent Wall Street Journal article on Ix.

Among the funding in the American Recovery & Reinvestment Act (ARRA) provided to NIH for comparative effectiveness research is an announcement about funds available to evaluate the impact of ‘information prescriptions.” The National Library of Medicine (NLM) is home to this project and the one-paragraph description of what they’re looking for is as follows:

(05) Comparative Effectiveness Research

05-LM-101  Effect of “Information Prescriptions” on Improving Care by Increasing Compliance with Medication Protocol Given to Discharged Emergency Department Patients. A significant fraction of patients who are given a set of prescriptions, such as when they leave a physician office or the Emergency Department, are known to disregard or curtail recommended medications. Individually tailored information about risks, benefits, costs and treatment options are given by some clinicians as “information prescriptions”, but the effectiveness of “information prescriptions” is not known. Studies in this area should determine value of such “information prescriptions” in improving patient compliance as contrasted to current discharge advice systems or standard office practices. Contact: Dr. Valerie Florance, 301-594-4882, florancev@mail.nih.gov.

However, the NLM confirms that the information prescription projects can address topics other than “medication compliance” and in all kinds of settings besides the ED. If information therapy (Ix) implementers out there are looking for a consultant or evaluation partner to collaborate with on a related project, please contact me at jseidman@ixcenter.org.

Bristish IxAction Alliance member, the Patient Information Forum (PiF), has just released a report, “Information: First Line Therapy?” (overview available here). Among PiF’s main conclusions:

1. Whenever possible, information should be the first therapy prescribed.
2. Information therapy (Ix) needs to be personalized and targeted to the “correct stage of the patient journey.”
3. Because of the vast information available and that the fact that much of it is “incorrect or misleading…there is a definite need for a more stringent monitoring system, condensing information and/or signposting information to direct professionals and patients to the most suitable resource.” They’re not sure how to operationalize this recommendation.

Based on these findings, PiF has identified a series of next steps — some of which are:

1. PiF wants to develop a bigger research base in three areas: a) “how information can be integrated into routine theerapuetic management;” b) “measure the impact of health information;” and c) assess the current state of “health information provision.”
2. PiF plans to become a more forceful public policy advocate in this arena in the UK.
3. PiF recognizes that it needs to “find ways to help the consumer health information workforce develop in their roles, increase their skills and share their knowledge and experiences more widely and effectively.”

The Center for Information Therapy (IxCenter) has answered some of the research questions in our white papers.

• “The Mysterious Maze of the World Wide Web: What Makes Internet Health Information High Quality?” evaluates the quality of diabetes content on the Web and — based on empirical research and scientifically validated tool development — provides a series of policy and operational recommendations for advancing more robust measurement of information quality.
• “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm” synthesizes the empirical evidence in support of Ix interventions and organizes them around the Institute of Medicine’s 10 health care delivery redesign recommendations from its “Crossing the Quality Chasm” report.

The IxCenter also has conducted other relevant research to answer these questions that fall into two categories (both of which are accessible to IxAction Alliance members through our member portal):

1. Ongoing review of the peer-reviewed literature. Through our bimonthly IxResearch Briefings, we have added about 40 more studies to the original “Ix Evidence Base” white paper, each of which describes implications for implementation of initiatives focused on proactive and targeted delivery of information to consumers/patients.
2. We have also collected more than 40 IxInsights reports and associated archived webinars on a wide array of innovations or best practices in the field. Although many of these interventions were implemented without a prospective study design, they still offer critical learnings about the best Ix implementation strategies.

As I have alluded to before, Ix Pioneer Sponsor Group Health Cooperative has provided a seed grant to help us develop a database that rigorously and methodically integrates these two types of evidence. By doing so, we will be able to answer the questions posed by PiF (and others) more robustly.

A new study confirms the importance of proactive delivery of information therapy (Ix) to consumers in order to improve early detection of cancer. “Patient and Physician Reminders to Promote Colon Cancer Screening,” published in the February 23 edition of Archives of Internal Medicine demonstrated that timely education delivered to patients improved screening rates better than messaging to physicians.

The study was conducted by new IxAction Alliance member Harvard Vanguard Medical Associates (HVMA) and Harvard Medical School and actually had four arms — intervention and control groups for both patients and physicians. For the former, HVMA patients overdue for colorectal cancer screening and randomized to the intervention group received a mailing with four components (and a second mailing six months later if still not screened).

1. Cover letter from HVMA CMO with most recent screening dates and note about being overdue
2. Educational pamphlet detailing screening options
3. Kit for fecal occult blood testing (FOBT)
4. Dedicated phone line to schedule colonoscopy or flexible sigmoidoscopy

HVMA educated all physicians prior to the intervention in a one-hour presentation and discussion at each HVMA clinic. Physicians randomized to the other intervention group received both active and passive electronic reminders for office visits with their patients overdue. Alerts provided one-click electronic ordering for screenings.

Researchers found a significant increase in screening (44% vs. 38%; p<.001) for the Ix approach (patient intervention group) but not for the physician reminders. There was a particularly large impact among the oldest (most at-risk) cohort; 70-80-year-old screening rates rose more than 10 percentage points (37.3% baseline increased to 47.4%).

This research reinforces what we know from much past research (for example, you can download the white paper, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm”): To improve quality and cost-effectiveness of care, the delivery system needs to provide timely information directly to consumers that stimulates healthy behaviors. This can have a profound impact. A 2006 study in the journal Cancer estimated that increasing screening rates to 70% could reduce colorectal cancer mortality by 23%.

Although HVMA demonstrated that its Ix intervention had a substantial impact, there clearly remains plenty of room for improvement. Even with the sound intervention strategy HVMA employed, other enhancements (some of which HVMA probably has implemented to some degree since the intervention was launched almost three years ago) could improve screening rates further. The Ix intervention could be more tailored to patients’ individual needs and circumstances by (just a few examples):

• Tailoring to individuals’ specific reasons for not getting screened (for example, what stage of behavior change they’re at — e.g., pre-contemplation, contemplation, preparation, etc.)
• Offering information/reminders via electronic, automated phone, and other media as well as via print/mail
• Providing a direct hyperlink from the electronic Ix directly to: an online scheduling of screening; and/or link to send a secure message to their primary care providers

It’s imperative that lessons from research such as this study help shape HHS’s implementation of the HIT provisions of the American Recovery & Reinvestment Act and Congress’s details of health care reform legislation. In both cases, it’s clear that engaging and activating consumers needs to be embedded into a redesigned delivery system.

A good study appeared in the October 30, 2008 New England Journal of Medicine related to the first public release of HCAHPS data. HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) is a “standardized survey of the experiences of adult inpatients with hospital care and services.” This study is based on July 2006-June 2007 voluntary reporting, but Medicare (CMS) is requiring hospital reporting going forward.

Overall experience data are not surprising: Reasonably satisfied but plenty of room for improvement. Although 89% of patients rated their overall experience 7 or better (10 being the best), only 63% rated it a 9 or 10.

What was most informative was where the data suggested were the greatest areas for improvement:

• Provision of clear discharge instructions
• Communication about medications
• Nursing care
• Pain control

I could make an argument that good information therapy (Ix) that was integrated into systems of care would improve performance in all four of these areas. Clearly, though, the first two areas for improvement are obvious targets for Ix interventions.

Hospitals that want to score better in how they provide discharge instructions and communicate about medications should be working hard now to embed Ix strategies into their core care delivery practices. With public reporting of HCAHPS data just around the corner, this could become an important strategic initiative for hospitals in competitive markets.

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.