The following is a guest post from Arna Ionescu, who is Domain Director, Connected Health for a leading innovation design firm, IDEO, an IxAction Alliance member. This follows up on earlier guest post she wrote, explaining how this innovation test evolved. You can also find more background on the IxCenter’s increasing emphasis on Ix innovation design. 

In our July IxAction Alliance webinar, we interactively brainstormed ways we could leverage curiosity to prompt higher engagement with information therapy. Out of all the ideas generated, participants picked the “High Blood Pressure Club” to explore further. A few weeks ago, I wrote a blog entry about our efforts to better understand the parameters of this club through a “$10, 10 minute prototype.”

Since reducing blood pressure takes a long time, we used the analogous context of gas guzzling to run our experiment. Our three participants self-reported long commutes and minimal awareness of gas consumption. After a week of measuring their baseline gas usage, we inducted them into the “Gas Guzzler Club” and provided a week of information therapy. This involved a short video and daily tips through a channel of their choice (email, text or voice – all three chose email).

So did it work? In terms of the before and after gas consumption one participant did better, one worse and one stayed the same. While the numbers are inconclusive, our follow-up conversations with each participant revealed interesting and sometimes unexpected insights.

1. Our guilt trip was effective only to a degree. Participants juxtaposed words like “pejorative” and “pariah” with “motivational,” and they wanted to take action to get out of the club. However, the guilt only got them so far. One participant said he decided not to remove his roof rack because of the status he associated with that accessory. Name-calling did not outweigh his ego’s need to posture.
2. Feeling that the others are real, living, breathing people is critical. Our participants commented that being asked to participate by a person they knew was critical to keep them going. They commented that receiving the tips from a real person named “Emily” made them feel accountable. They commented that they wished they had more connection with others who do the same drive so they can learn from others’ successes. They commented that they wished they could see the group’s success – how much gas and money had their group of x people saved – since that would feel more significant than just their solitary success. It was clear that the secondary motivation prompted by continuous interaction with real people was as motivational, if not more so, than the primary motivation of reducing gas usage. The design of the club and communications should elevate that human connection and support.
3. The information therapy and the rewards must be personalized. People crave a genuine connection, and if their specific situation and preferences aren’t taken into account, then they’ll tune it all out. Participants commented that both tips and rewards must be personalized; tips must be relevant to their particular drives and rewards must correlate to what matters most to each individual.
4. Getting past the initial skepticism takes effort – so be prepared for it. Participants didn’t buy that small changes would make a difference. The design of this club should include a mechanism that provides constant feedback correlating the output data with a person’s actions. People forget what they did and have trouble relating cause and effect, so we need to help them with that.

This is a sample of the insights we culled from our $10, 10-minute experiment. This experiment wasn’t about statistical significance, but about developing a good sense of what matters to people and where our risk factors lay should we pilot an actual High Blood Pressure Club. Given our experience, we feel the idea holds merit, and we know more about where and how to focus our design efforts.

Who’s interested in taking this further?

The following is a guest post from Arna Ionescu, who is Domain Director, Connected Health for a leading innovation design firm, IDEO, an IxAction Alliance member. You can also find more background on the IxCenter’s increasing emphasis on Ix innovation design.

Thank you to the IxAction Alliance members who participated in our interactive webinar last Tuesday. During the webinar we used IDEO’s design approach to tackle the challenge of providing effective Information Therapy (Ix) to a fictional character named Vernon, who has minimal resources and was recently diagnosed with high blood pressure.

To inspire solutions for this challenge, members of the IxAction Alliance submitted images of unexpected learning moments in their daily lives. These images spanned from public service billboards to Snapple caps and restaurant placemats. In advance of the webinar, the IDEO team synthesized the images into brainstorm questions.

The webinar attendees voted and selected the brainstorm question, “How Might We leverage curiosity to prompt Vernon to engage with Ix?” Following IDEO’s brainstorm rules, attendees submitted ideas using the webinar software.

More than 30 ideas were generated in the ten minute brainstorm, and a second vote allowed the attendees to select which idea to pursue further. Attendees selected the “High Blood Pressure Club.” We discussed “$10, 10 minute prototypes” – an approach that allows us to try out fast and cheap experiments to gain insight before costly design and implementation efforts.

Two members of the Alliance community volunteered to explore the High Blood Pressure Club further. In subsequent discussions, we refined the idea to an online forum that people join when diagnosed with high blood pressure. We hypothesized that members would compete to reach emeritus status. We further hypothesized that people might feel more supported if they were paired with a buddy in the club, making the competition a team sport.

As we refined the idea, a number of questions came up, including: How do we reward people? Is emeritus status enough of a motivation to participate actively? Should buddy pairs be random or selected by club members? What’s the best recruiting mechanism for new members?

We decided to explore our questions around emeritus status using a $10, 10 minute prototype. Because feedback in healthcare takes a long time, we identified an analogous context in which to run the test. Instead of focusing on lowering blood pressure, we would focus on lowering gas usage when driving.

Next week we will start a two-week experiment about our “Gas Guzzler Club.” Three participants will measure a week-long baseline of their gas usage. At the beginning of the second week, we will “induct” our participants into the Gas Guzzler Club, letting them know they can achieve emeritus status, and provide a short tutorial on how to use less gas. Additionally, we will send daily tips in a medium of their choice (text, email, or voice). At the end of the second week the most successful participant will be granted emeritus status. We will then interview each participant about their experience to gain insight into how well we motivated them.

This plan will take relatively little effort yet should reveal a lot well before we invest significant time and money. We will follow up with another post next week to fill you in on the start of our experiment!

Among the many things that made the IxCenter’s Patient-Centered HIT Initiative great was listening in to what patients were saying about their care. We can learn an enormous amount from listening to consumers about their care experiences.

IxAction Alliance member, MedEncentive, has had great success in controlling costs and improving the experience of care by using clinician and consumer incentives for prescribing information (doctors) and filling Ix prescriptions (patients). One of the things that they do in collecting their data is invite consumers to share their comments about MedEncentive’s information therapy (Ix) program.

When you put together a string of these comments, you begin to get a picture of what Ix can do to improve consumer engagement, enhance the clinician-patient relationship, and launch an environment of participatory medicine.

Since we know that 40% to 80% of everything that a doctor says to a patient is forgotten by the time he or she returns home…

“I am thrilled to be able to get additional information and even to print it out to read again later.”

“I have learned things from reading articles that are provided. My doctor tells me numerous things but it is always nice to be able to research more at my own leisure.”

“Program provides more detailed information than a patient usually gets in the doctor’s office. Information often answers questions that come to mind after the office visit.”

“This information that is provided helps me understand what it is that I actually have or need to do. My Dr may tell me at the time of my seeing her, however the information doesn’t always stick in my head if I am not feeling well. This reiterates the information that my Dr had told me at the time of my appointment.”

Consumers typically appreciate navigation to resources that are targeted to their own situation…

“This is very helpful. It gives more information that is specific to the condition without having to research it on line yourself. Thanks.”

Ix can elevate the level of dialog between clinician and patient so that they can make better use of their limited time together…

“I think this program is very helpful. It allows me to understand better the things that my doctor and I talk about.”

“the articles are informative…it gives me information that I may not get in a 15-20 minute doctor appointment”

“I can see that this program is beneficial to me, by reading I educate myself a lot, there is some stuff that doctor don’t go deeply because of time, I guess, and by reading all this info, it is like it makes the picture more clear. Thank you for doing this!”

“Good means of informing patients in a more in-depth manner than is often possible in a doc’s office”

“I feel that it gives more comprehensive information than what I received in the Doctor’s office.”

That reinforcing information facilitates true participatory medicine…

“I am able to ask my doctor questions because of the knowledge I get from information therapy.”

Ix provides necessary reinforcement to stimulate behavior change…

“In our fast-paced world we often need to hear the same thing several times from several sources! I appreciate being reminded of steps that can/should enhance my quality of life–healthy eating, regular exercise, regular medical check-ups, etc. Most of us KNOW these things, but often overlook them until it’s too late!”

And, ultimately, consumers feel more prepared for what lies ahead for them…

“I feel very strongly about the benefits of information therapy. I learn a lot from reading the information…. Now I know more of what to expect if my condition worsens.”

Finally, Ix can help change the fundamental orientation of the delivery system…

“Information therapy has been very beneficial to me. It confirms the preventative therapies that my doctor recommends to me. This is a plus to my taking good care of myself and not all the time relying on medicine alone. I like this focus on wellness - to me it is what healthcare is about and not “sick-care” where we only do things when we are already sick. Thank you for this brilliant innovation. I wish the whole country will spouse your Wellness Program.”

The following is a guest post from Dorothy Jeffress, Executive Director of the Center for Advancing Health, an IxAction Alliance member.

It is an exciting time for those who support information therapy (Ix).  It seems that current health policy/reform discussions on Capitol Hill and around the Beltway are frequently touching on the need to incorporate strategies for enhanced patient engagement through targeted health information and integration of shared decision aids for example. But much of the future success of these new policies lies ultimately in the hands of consumers.  So as forward thinking as requirements for meaningful use in HIT roll-out might be, all of this recent rhetoric seems to overlook the fact that few consumers currently make use of available tools for selecting health plans, hospitals or physicians.   In fact at the Center for Advancing Health, we have noticed that few consumers are actually crying out for the responsibility of making more decisions about their health and health care.

Why do so many of us abandon the familiar role of savvy consumer when making decisions about our health care, and instead choose our health plan on the basis of its ads or the hospital recommended by the woman behind us in the 7-11 checkout line?

This question is the basis of a research report called “Getting Tools Used” issued in June by the Center for Advancing Health.  The aim was to learn from successful decision support tools outside of health care how to increase people’s use of tools to make decisions within health care.  Detailed case studies of four successful non-health-related tools were developed: Consumer Reports: Car Buying Guide; eBay; US News & World Report: America’s Best Colleges, and the FDA’s federally mandated Nutrition Facts Panels (NFP).  Five experts in health-related decision aids commented on the keys to their success and the implications for tools relevant to choices in health care.

The findings were clear:

• The successful tools all come from a trustworthy, objective source
• Their content is tailored to the interests of the audience
• Each tool is targeted to the users’ capabilities
• All of them are highly visible and readily available nationwide.

Implications of these findings for sponsors of health care decision aids can be found on the CFAH Website. For the rest of us, however, the critical issue is this:  Our indifference to health-related decision aids is not trivial.  Health care has never been more complicated.  We are more responsible for making more decisions about our care than ever before.  And the stakes of our decisions have never been so high.  But there is simply no way we can make well informed decisions without relying on objective information that is arrayed so that we can understand and weigh the trade-offs of our options.  Increasingly, being able to find safe, decent health care depends on our ability to locate trustworthy tools when we need them — and then to use them to help us make the choices that meet our needs and preferences.

We need better tools, yes.  But we also must recognize that to realize their benefit, we have to use them.

There was a song from the 1960s musical “Hair,” that begins “LBJ took the IRT…” Some days in DC, it feels like the wonks’ version of that. In other words, an abundance of acronyms but a lot more debate about HIT and “meaningful use” and a lot less long, flowing hair and “youth of America on LSD.”

There was an excellent briefing on Capitol Hill yesterday, organized by AARP and sponsored by the Alliance for Better Health Care (ABHC). It was officially “off the record,” so I won’t quote anybody, but it’s safe to say that there was strong consensus among the diverse panel on several important issues.

ABHC, a multi-stakeholder group that promotes comparative effectiveness research (CER) addressed several issues, including CER’s role in addressing disparities, integrating CER into clinician workflow and health plan activities, and the employer perspective on CER.

Several issues relating to consumers emerged from the discussion. First, CER is critically important to filling information gaps for clinicians and patients. Second, if we want to CER to truly help patients, they need to be at the table in CER design to identify priorities and ask research questions. Third, CER findings need to be broadly disseminated, including to consumers, which means that they need to be translated into a way that makes CER findings meaningful to consumers.

Finally, CER dissemination is not enough to ensure the consumer engagement in care that is so critical to better, more efficient health care. We need to come up with creative strategies — like information therapy (Ix) — to ensure that CER findings are well integrated into the care delivery process in a way that supports shared decision making (SDM) and participatory medicine.

I also attended a meeting the eHealth Initiative (eHI) Privacy Workgroup hosted yesterday with staff from the Government Accountability Office (GAO) that are studying privacy issues related to health information technology (HIT) implementation. GAO is examining privacy practices in health information exchange (HIE) organizations and other provider networks that exchange clinical patient data.

CareEntrust is unusual among HIEs in that it decided to develop the consumer application first, which it rolled out in May 2007. Consumers in Kansas City can now access through a secure portal a wide range of personal data on medications, lab results, visits, procedures, immunization, vital signs, demographics, and allergies. It turns that, thus far, about 18% of consumers now use these data — certainly better than the general population, but still a lot of room for improvement.

Also from the meeting, I heard that the operational HIEs with opt-out policies report very few (far less than 1%) of consumers are opting out of participation in the HIE. Interesting note, however, about what both Kansas City & Memphis HIEs say about the few that do opt out. I’m not sure exactly what it means, but it turns out that most of these opting-out consumers come from the IT industry. Is that funny or scary?

A final interesting point of discussion: Data related to discharge and care coordination have been defined as “operations” data (I gather through HIPAA). In many cases, however, there’s a strong argument to be made for it to be redefined as “treatment” data in order to facilitate greater continuity of care and what the Institute of Medicine recommends in terms of “continuous healing relationships.”

Over on the e-patients.net blog this morning, Gilles Frydman addresses two things relating to our government and the world of e-patients. First, the Agency for Healthcare Research & Quality (AHRQ) has a public service campaign, urging consumers to embrace participatory medicine and providing guidance for engaging in dialog with their clinicians.

AHRQ has done a lot of good things in this arena, including promoting information therapy among its best practices for improving consumer experience with care (and CAHPS performance). Here’s an excerpt:

One way to facilitate patient education and behavioral change is to give patients access to pertinent and specific evidence-based information that they can use to educate themselves and make better decisions about their behaviors, their health, and their health care. Ideally, this strategy takes advantage of the electronic infrastructure emerging in many health care settings, but computer access is not necessary.

While there are several information products available to clinicians, one of the most prominent examples of this strategy is Information Therapy (Ix™), a strategy that aims to overcome many of the barriers that prevent health care consumers from feeling sufficiently informed and empowered to manage their health.

I’m hopeful that AHRQ’s work on these types of efforts will move the dial, though it’s hard to determine their impact thus far.

Gilles also addresses David Leonhardt’s NYT Magazine Obama interview that I described on Monday, though we had a little different reactions. Gilles responds from the perspective of a certain portion of consumers living with rare conditions, though not necessarily from the more general consumer perspective.

To put the President’s remarks fully in context, here’s the set-up for Obama’s response — the question that David asked him:

You have suggested that health care is now the No. 1 legislative priority. It seems to me this is only a small generalization — to say that the way the medical system works now is, people go to the doctor; the doctor tells them what treatments they need; they get those treatments, regardless of cost or, frankly, regardless of whether they’re effective. I wonder if you could talk to people about how going to the doctor will be different in the future; how they will experience medical care differently on the other side of health care reform.

I think that what is interesting is that — with this framing — David is asking a policy question, but inviting a response put in consumer terms.

Obama begins his response with the policy answer that fits in with what I, Gilles, AHRQ all believe, “First of all, I do think consumers have gotten more active in their own treatments in a way that’s very useful. And I think that should continue to be encouraged, to the extent that we can provide consumers with more information about their own well-being — that, I think, can be helpful.”

But Obama then shares his own personal experience from his perspective as a patient and a caregiver.  In fact, he deliberately adds, “I just speak from my own experience…” to be clear.

On this particular point, I personally don’t think any of us should tell a patient/caregiver that their view of how to interact with their clinicians is wrong.  Even if that patient happens to be the most powerful person in the world, in that moment, he is still a patient or caregiver.

e-Patient Dave made an important point on the e-patients.net blog yesterday, “The I in IT stands for Information.” It’s a good reminder, as is the first comment to his post that, “Data is only information if you can use it.”

We’ve been trying to drive home both these points for a long time, such as in the 2005 California HealthCare Foundation Issue Brief, “Lost in Translation: Consumer Health Information in an Interoperable World.” From the overview:

Each day, more people seek information from online sources than from their own physician. But availability of information does not necessarily translate into understanding or taking appropriate actions. While momentum builds for a National Health Information Network infrastructure, it remains unclear what role patients will play in the interconnected world of providers.

As clinical information becomes more directly available to consumers through the Internet or through other electronic communications from providers, a mechanism for meaningful, consistent translation to engage consumers is lagging. For example, a diabetic patient accessing his personal health record may find that a recent hemoglobin A1c test is 10% but what does the patient do with this information? Are there ways to help patients understand the data — and the actions they should take — without having to schedule a visit with a provider? Are there ways of ensuring that an Internet search could supply patients with meaningful information?

This 2005 report examines consumer-based information and what could be done to better integrate consumer health information standards into the NHIN framework.

This also brings us back to the fervent discussion that has brought up important insights earlier in the week on the e-patient blog as well as some on The Health Care Blog (in response to the “Health 2.0 Meets Ix” speaker posts on “Building Health 2.0 into the Delivery System”) and additional points I’ve addressed here.

What is critically important is never to think information therapy (Ix) is just about the information, let alone just about the data. There is a building process at work in Ix that begins with data, evolves to information, gradually builds into knowledge, ultimately driving behavior. Ix advocates make no argument that the data-information-knowledge-behavior sequence is automatic.

Quite the contrary. We are fervent believers that good information itself is only one ingredient in effective decision making or behavior change. In fact, some of our most active IxAction Alliance members have developed entire bodies of work on how to do that, such as the transtheoretical model of behavior change or the science of shared decision making.

We also recognize that, as the famous marathoner-cardiologist-philosopher George Sheehan once said, “Each of us is an experiment of one…” While I vouch for his comment in terms of its original target (marathon training), I think it has much broader applications as we think about the diverse needs of the population in terms of how people learn, use information, make decisions, and behave.

I posted on February 19 about the launch of our Ix for Rx Management work. We are embarking on research to examine how information therapy (Ix) strategies can address the huge problems associated with inadequate medication adherence, safety, and selection.

This work will lead to a series of public webinars and one or more white papers in September and October of this year and probably additional events, learning collaboratives or other activities in 2010. As we launch this work, I’d love to have input from as many people as possible as to where the most important issues are and what are the best leverage points for addressing them.

I welcome comments on the following questions:

• What are the greatest barriers to medication adherence (from list below or others)?
  • Knowledge
  • Motivation
  • Health literacy
  • Cost
  • Provider support
  • Social support
• What are the best Ix levers for improving medication adherence (e.g.,email/cell phone reminders targeted to moment in care)?
• How can Ix strategies be deployed to reduce medication errors?
• What Ix tools are most useful in ensuring appropriate selection of medications for an individual?

“Drugs don’t work in patients who don’t take them.” So said former U.S. Surgeon General C. Everett Koop, MD. Back to something I wrote last week on this blog, sometimes a statement obvious on its face can be profound.

The question, of course, is: Why? Why do people take only about half of the medications that they should to help them prevent disease, recuperate from acute illness, and manage chronic conditions? Why do an estimated 125,000 people die every in the U.S. because of medication non-adherence? And what could we do with the $100 billion our country will spend in 2009 because of this problem?

There’s no shortage of research to help us answer these questions, one of the best sources being the Cochrane Collaboration review on “Interventions for enhancing medication adherence.” In fact, many information therapy (Ix) interventions have proven at least somewhat successful; Ix has been a critical component of the successful interventions below.

• Targeted information
• Timely reminders
• Self-monitoring
• Reinforcement
• Counseling

I attended a stakeholder meeting today convened by the National Consumers League regarding a proposed national medication adherence campaign. One of the big issues that arose is the degree to which a public relations campaign designed to raise consumer awareness can lead to substantial increases in medication adherence.

Although awareness certainly is an important precursor, it may be the easiest step in the pathway that takes the average consumer along the road to information consumption, then knowledge accumulation, and ultimately leading to behavior change. We know there’s a large body of research that tells us that, in order to be successful, our Ix initiatives need to “meet people where they are.” More specifically, we need to target the information to the individual’s particular moment in care and tailor it to their particular needs and circumstances.

With that in mind, the Center for Information Therapy will soon embark on a new body of work around “Ix for Rx Management.” The goal will be to summarize research — on the problem but even more so about the solutions — then stimulate innovation and diffuse best practices.

Although medication adherence is one of the top issues, we will also explore other Rx management issues to address medication safety, poly-pharmacy, and other issues. Over the next few weeks, we will roll out more details on our plans in this arena, and I urge those interested in our work to get in touch with us.

Jessie Gruman, PhD, recently published an excellent collection of essays related to health behavior research. In less than 100 pages, Gruman draws from much of her work from the 15+ years she has led the Center for the Advancement of Health.

Behavior Matters is a treasure trove of insights for all who (in Gruman’s words) “believe that we will not solve the health problems of our time without systematically addressing health behavior.” The list of chapters (each is a very readable essay rather than a dense academic treatise) demonstrates the varied but connected themes worthy of exploration as we think about how to engage consumers/patients/people in any reformed health care delivery system.

1. Why Study Health Behavior Now?
2. Dilemmas of Progress for Health Behavior Research
3. Is Health Promotion for Older Adults Just Nice or Really Necessary?
4. Are We Really “Consumers” of Health and Health Care?
5. Prevention Deficit Disorder: When Politics and Science Collide
6. Promises and Pitfalls on the Way to Transforming Consumer Health Decision-Making
7. How Science and the Media Undermine Behavior Change
8. Improving Health: Is Clinical Medicine Up to the Task?
9. Follow the Money: What Health Behavior Professionals Need to Know about Foundation Funding
10. The Mutual Obligations of Scientists and Society

Chapter 6 is based on a keynote address Gruman delivered at one of our information therapy (Ix) conferences. The entire collection is well worth your time, but if you’re still not sure, the best way to get started is to read Gruman’s “About This Book,” which succinctly summarizes each essay.