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Meaningful Use, ONC, Ix, and Me
-------------------------------
By Josh Seidman, on November 18th, 2009 10

Since we launched the the Center for Information Therapy (IxCenter)
eight years ago, we have focused on three core objectives:
1. Advancing the practice of information therapy (Ix).

2. Building the science around Ix.
3. Embedding Ix into everyday care delivery.

The rationale for this approach has always been straightforward. We
needed to make enough progress on the first two objectives in order to
both advance the field and make the third objective possible.
We have begun to witness substantial signs of progress. Indeed, we
brought Ix practice and science to a level that facilitated our 2009
efforts to embed Ix into the meaningful use (MU) definition. The MU
framework is associated with tens of billions of dollars in incentives
to be paid out to providers under the HITECH provisions of the
Recovery Act. In collaboration with others — particularly those
organizations active in the Consumer Partnership for eHealth — the
draft definition of the MU requirements include several core elements
of Ix (i.e., patient-specific education resources, after-care
summaries, prevention/follow-up reminders, self-management tools,
etc.).

(As background, the health information technology (HIT) provisions
(also known as HITECH) of the recovery act/stimulus bill (American
Recovery & Reinvestment Act of 2009) established tens of billions
of dollars of incentives for Medicare and Medicaid providers who
not only adopt electronic health records (EHRs), but become
“meaningful users” of them. This distinction was critically
important because it is common wisdom that simply adopting HIT
systems will have little impact if those tools are not deployed in
such a way that they help clinicians and patients manage
information effectively and communicate better.)
David Blumenthal, who directs the Office of the National Coordinator
(ONC) for HIT, and other senior ONC staff have made a strong
commitment to ensuring the patient-facing aspects of meaningful use
remain a high priority as HITECH implementation progresses. Although
the incentives will be administered by the Centers for Medicare &
Medicaid Services (CMS), ONC will be responsible for supporting the
extension centers and HIT research center that will support providers’
HIT adoption.

In a testament to the critical role that the IxAction Alliance and the
IxCenter have played in advancing consumer-facing HIT applications,
ONC has asked me to join their staff to ensure the successful
translation of MU requirements into HIT implementation. This is a
tremendous opportunity to fulfill the IxCenter’s mission of embedding
Ix into everyday care delivery expectations, and therefore, an
opportunity I had to embrace.
Implications for the IxCenter and the IxAction Alliance

In addressing my departure and the current challenging business
environment, the IxCenter Board of Directors has considered multiple
possible scenarios for sustaining the momentum of Ix progress. The
Board decided that the best course is to close the IxCenter itself and
to position the IxAction Alliance for continued growth and impact by
integration of the Alliance into another not-for-profit organization.
After careful consideration, the IxCenter Board has decided to
transfer management of the Alliance and donate the IxCenter’s core
intellectual property to the eHealth Initiative (eHI), a
multi-stakeholder organization of more than 170 members. The IxCenter
will cease operations on 11/30/09.
Through this transition, we believe strongly that the IxAction
Alliance can continue to be an engine of progress, stimulating
innovation and diffusing best practices. IxAction has evolved in the
last few years into a community of shared learning — a cross between
an innovation network and a learning collaborative.

We are also very pleased that the transition to eHI will create
alignment with an excellent organization and a larger immediate
constituency. eHI’s mission is to drive improvement in the quality,
safety and efficiency of health care through information and
information technology. Through its own strategic planning process,
eHI has recently placed greater emphasis on consumer engagement and
patient-centered care. IxAction will continue to drive forward with
the same mission and have the opportunity to extend its reach,
including a wider array of providers, state-based organizations, and
other health care leaders.
“By combining the strengths of eHI and the Alliance, we will emerge as
a stronger advocate for patient-centered care and HIT. Working
together, we can make a significant and meaningful impact on health
care. In the coming weeks, we will work closely with leaders and
members of the Ix Action Alliance to ensure a smooth transition” said
Jennifer Covich, Interim Chief Executive Officer.

The substantial intellectual assets that the IxCenter has amassed in
the last eight years—most notably the several dozen IxInsights
reports, IxResearch Briefings, and other IxAction resources—will
transition with the Alliance to their new home. There, they will be
maintained and nurtured, and eHI will build upon this work as it
brings its wealth of knowledge and expertise to the task of managing
the Alliance. IxAction’s output will continue to provide enormous
value to organizations within the Alliance and externally—including
helping to inform the work that ONC does in MU implementation.
There will be no interruption in support for the IxAction Alliance.
Members will continue to benefit through the leadership provided by
eHealth Initiative. The web portal, briefings, reports and IxAction
events will continue to be available. Staff who are also transitioning
from from the IxCenter will join in the future support for the efforts
and activities of the Ix Action Alliance.

Organizations who have questions or comments about the transition
should contact Cindy Throop at cindy.throop@ehealthinitiative.org or
Jennifer Covich at Jennifer.Covich@ehealthinitiative.org. We welcome
all your suggestions and ideas.
Looking Back
The IxCenter and the IxAction Alliance have accomplished a great deal.

We have stimulated innovation and diffused best practices on an
 ongoing basis among dozens of progressive organizations across the
 country.
We have produced a rich set of resources in the form of dozens of
 white papers, webinars, IxInsights reports, research briefings,
 conference presentations, and many other documents.

Through the efforts of the Alliance’s Ix Payer Workgroup, we have
 made great strides in building an infrastructure for widespread Ix
 adoption: Inclusion of Ix criteria in URAC disease management
 standards, NBCH eValue8 RFI, and Healthy People 2020 objectives.
We have played an instrumental role in ensuring that Ix is a part
 of the draft definition of HIT meaningful use, and have an
 opportunity now for that work to continue as a federal government
 priority with tens of billions of dollars in provider incentives
 behind it.

Popularity: 22%  Posted in EHRs, Engaging Consumers, Inside the
Beltway
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Healthy People 2020 Objectives on HIT & Health Communications–Public
Comment Opportunity
--------------------------------------------------------------------

By Josh Seidman, on November 18th, 2009 1
The Center for Information Therapy has been working with the U.S.
Department of Health & Human Services (HHS) for two years to develop a
Healthy People 2020 Ix objective, as part of the HHS’s efforts to
update and improve its health communication & HIT objectives for the
next decade. We are pleased to report that the following objective has
been released for public comment, the last stage of the process.

HC/HIT HP 2020–8: Increase the proportion of patients whose doctor
recommends personalized health information resources to help them
manage their health.
In addition, other Ix-related objectives are included in this section,
including:

HC/HIT HP2020–6: Increase the proportion of persons who report
that their health care providers always involved them in decisions
about their health care as much as they wanted.
HC/HIT HP2020–7: Increase the proportion of persons who use
electronic personal health management tools.

The public comment period is now open, and it is a great opportunity
to voice your opinion about what should be the country’s public health
objectives for the next decade.
Popularity: 23%  Posted in Consumer empowerment, Decision Support,
Engaging Consumers, Healthy People 2020, Inside the Beltway, PHRs,
Participatory Medicine
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AHRQ Publishes Extensive Review of Consumer Health Informatics Apps
-------------------------------------------------------------------
By Josh Seidman, on October 23rd, 2009 0

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.
Popularity: 26%  Posted in Engaging Consumers, Health 2.0 Space, PHRs,
Participatory Medicine, Research, Secure messaging
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Journal of Participatory Medicine Launch
----------------------------------------
By Cindy, on October 21st, 2009 0

Improving health care:
Journal of Participatory Medicine
will document methods that work
for patient/provider collaboration
==================================
Journal of Participatory Medicine

Launch at Connected Health Symposium
features essays by visionaries in
health care, Internet, high tech, business, and sociology
---------------------------------------------------------
Patient engagement and patient empowerment are popular topics, with
hundreds of thousands of Google hits, but there’s precious little
information on how to do them well. A new academic journal being
launched this week, the Journal of Participatory Medicine, aims to
change that.

Created by experienced pioneers of the “e-patient” movement, the
Journal will be introduced this week at the Connected Health Symposium
in Boston, hosted by the Partners HealthCare Center for Connected
Health. The Journal is an official publication of the Society for
Participatory Medicine, founded in 2009 by the patients and physicians
who have worked together for several years at e-patients.net.
“Because health professionals can’t do it alone”
------------------------------------------------

Participatory Medicine is a new approach that encourages and expects
active patient involvement in all aspects of care. It builds on the
work documented at the e-patients.net blog, whose slogan is “Because
health professionals can’t do it alone.” The group’s landmark 2007
paper “E-Patients: How They Can Help Us Heal Healthcare” tells many
stories of engaged, empowered e-patients who substantially improved
their own outcome and the outcomes of others by supplementing or even
going beyond what their physicians alone could do.
That paper and subsequent blog posts have further documented the
stresses and information overload faced by physicians today, and flaws
in today’s care delivery system and personal health data, including
many anecdotes of patients who made a pivotal difference through
active engagement. Now, the Journal of Participatory Medicine will
move the field from anecdote to science, with articles on principles,
methods and evidence-based outcomes.

Authoritative and accessible; peer-reviewed by patients and health
care professionals
The Journal will be written and peer-reviewed by and for all
stakeholders: patients, healthcare providers, caregivers, researchers,
payers and policymakers. Physicians who have practiced in the
participatory model report greater satisfaction when they work with
patients who are actively engaged. Similarly, participatory patients
say they feel empowered, heard, and more in control.

Free continuous updates online
------------------------------
The Journal will publish continuously and will be freely accessible to
the public at http://jopm.org. Following the inaugural issue in early
2010, articles will be published as they are reviewed, accepted, and
edited; there may also be single topic special issues. Email alerts
will inform subscribers when new material has been posted. Anyone can
sign up to receive these alerts at http://jopm.org/register.php

Available online now is a collection of invited essays that serve as
the “launch pad” from which the journal will grow. In their opening
editorial “Why the Journal?” the editors write, “We consider this
introductory issue an invitation for you to join us as we create a
robust journal that will serve a growing community of concerned
individuals and professionals.”
Mission: To transform the culture of medicine

The Journal’s mission is to transform the culture of medicine by
providing an evidence base for participatory health and medicine. It
aims to advance both science and practice, focusing on six content
areas: research articles, editorials, narratives, case reports,
reviews, and updates on related research in other media. It will
explore how participation affects outcomes, resources, and
relationships in healthcare; which interventions increase
participation; and the types of evidence that provide the most
reliable answers.
Importance of a broad-based peer review process
-----------------------------------------------

The Journal uses a new, broad-based peer review process to
significantly improve on traditional academic journals. While still
managed by experienced journal editors, JoPM’s peer review process
will be open to a far broader set of minds for scrutiny of methods and
analysis. Improved accuracy and effectiveness are vital as the
population ages and healthcare costs continue to rise.
In the first issue of JoPM, Richard Smith MD, editor of the
prestigious British Medical Journal for 25 years, writes that “most of
what appears in peer reviewed journals is scientifically weak.” This
echoes the words of Marcia Angell MD in The New York Review of Books,
who wrote in January “It is simply no longer possible to believe much
of the clinical research that is published, or to rely on the judgment
of trusted physicians or authoritative medical guidelines. I take no
pleasure in this conclusion, which I reached slowly and reluctantly
over my two decades as an editor of The New England Journal of
Medicine.” Considering the pivotal role that journals play in policy
and treatment decisions, JoPM’s broad-based process aims to improve
the reliability of the process and the resulting research.

Bringing thought leadership from many disciplines to healthcare
---------------------------------------------------------------
Because of the complexity and size of the healthcare challenge, the
Journal of Participatory Medicine invites participation from all
disciplines that can help.

Leadership of the Journal and the Society is shared between physicians
and laypeople.
Co-Editors are Jessie Gruman, PhD, Founder and President of the
 Center for Advancing Health, and author of AfterSchock: What to Do
 When the Doctor Gives You—or Someone You Love—a Devastating
 Diagnosis; and Charles W. Smith, MD, Executive Associate Dean for
 Clinical Affairs and Professor of Family and Community Medicine,
 University of Arkansas for Medical Sciences, and Founder of
 eDocAmerica.

Deputy Editor is Alan Greene, MD, Founding President of the
 Society, Co-founder of DrGreene.com, Clinical Professor at
 Stanford University and Chief of Future Health at A.D.A.M., Inc.
Managing Editor is Sarah Greene, publishing and new media
 entrepreneur with three startups in science, health, and medicine
 acquired by Wiley, Elsevier, and Thomson Healthcare.

Founding Co-Chairs of the Society are Daniel Z. Sands MD, MPH of
 Cisco Systems and Beth Israel Deaconess Medical Center, and his
 patient “e‑Patient Dave” deBronkart, of ePatientDave.com and
 TimeTrade Appointment Systems.
Some of the articles featured in the first issue:

Investor and futurist Esther Dyson on “Why in the world
 ‘participatory medicine’?”
Longtime JAMA editor George Lundberg MD and former AARP board
 chair Joanne Disch PhD, RN: “Why healthcare professionals should
 be interested in PM”

Kate Lorig RN, Dr.P.H., Director of Stanford School of Medicine’s
 Patient Education Research Center: “Why people should be
 interested in PM,”
David Lansky, CEO of Pacific Business Group on Health and former
 Senior Director at the Markle Foundation, on “Why payers should be
 interested in PM”

Kurt Stange MD, PhD, Case Western Reserve University and editor of
 the Annals of Family Medicine, and Gilles Frydman, founder of the
 ACOR.org network of cancer communities, on “Building an
 interdisciplinary field of inquiry and practice”
Richard Smith MD, former editor of BMJ, and Musa Mayer, famed
 breast cancer activist, on “The Value and Questions of Peer
 Review”

and many more articles
Launch is the closing event at Connected Health Symposium
---------------------------------------------------------

The official launch of the journal will occur on Thursday, October 22
at 3:30 PM as part of a panel discussion about the “Changing Role of
the Patient in Health Care and the Changing Rules of the Game for a
New Publication.”
Moderated by Co-editor Jessie Gruman, the panel will include Gilles
Frydman, Founder and President of ACOR (Association of Cancer Online
Resources) and Editorial Board Member; Dan Hoch, MD, PhD, Dept. of
Neurology, Mass. General Hospital, Co-founder of Braintalk, and
Editorial Board Member; Deputy Editor Alan Greene, MD, and Co-editor
Charles W. Smith, MD.

The Society chose to launch its journal at the Connected Health
Symposium because of the long and sustained commitment Partners
HealthCare and the Center for Connected Health have had to exploring
innovative and effective ways to deliver quality healthcare outside of
traditional medical settings. According to Gilles Frydman “Many of the
editorial advisers and board advisers for the journal have been
working with the Center for Connected Health for years. We are
delighted to be partnering with them for this launch.”
About the Society for Participatory Medicine
--------------------------------------------

The Society for Participatory Medicine was founded in 2009 to learn
about and promote PM through writing, speaking, social networking, and
other channels. It builds on the work of Tom Ferguson, MD, who
envisioned the e-patient movement within months of the birth of the
Web browser.
Society membership is open to anyone who shares the belief that PM
should be the operative model for healthcare, that all involved
parties share in a collective decision-making process, and that the
patient is central to that process. Through PM we can teach patients
to take responsibility for their own health and providers to
effectively invite patients into this.

About the Center for Connected Health and the Connected Health
Symposium
--------------------------------------------------------------
The Center for Connected Health, a division of Partners HealthCare in
Boston, develops innovative and effective solutions for delivering
quality patient care outside of the traditional medical setting. The
Center engages in pioneering research in a wide range of connected
health-related areas and works to advance the field through its
convening and publishing activities. The term “connected health”
reflects the range of opportunities for technology-enabled care
programs and the potential for new strategies in healthcare delivery.
The Connected Health Symposium asks how information technology – cell
phones, computers, the Internet and other tools – can help people
manage chronic conditions, maintain health and wellness, and age with
independence.

Journal of Participatory Medicine: http://jopm.org or
www.facebook.com/JourPM
Follow the journal on Twitter: @jourPM and #WhyPM

Society for Participatory Medicine: http://participatorymedicine.org
or www.facebook.com/participatorymedicine
Connected Health Symposium:
http://www.connected-health.org/events/symposium-2009.aspx

Popularity: 31%  Posted in Consumer empowerment, Engaging Consumers,
Participatory Medicine, Patient Satisfaction, Patient Stories,
Patient-Centered Medical Home, Patient-Clinician Relationship, The New
Health Care Consumer, Uncategorized
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International Effort to Institutionalize Patient Engagement in Policy
---------------------------------------------------------------------

By Josh Seidman, on October 19th, 2009 0
The International Alliance of Patient Organizations (IAPO) released a
“Policy Statement” last week to outline recommendations for
information providers to meet consumer information needs. IAPO calls
for greater patient involvement in policy development. IAPO explains
the need for the statement:

“At present, the patients’ voice is not valued enough in
policy-making and practice. Patient involvement is often merely
tokenism; its influence on policy-making can be restricted by
practical and financial structures, differing knowledge bases,
cultural barriers and personal attitudes. Patient involvement
should not be dependent on the good will of individuals but
institutionalised in policy frameworks in order to become the
rule, rather than the exception.”
IAPO’s policy statement includes four specific recommendations:

1. Stakeholders should extensively review existing healthcare
mechanisms and structures for patient involvement, working with
patients and patients’ representatives so that patient involvement
is integrated into all decision-making processes, occurring from
the start and on an ongoing basis.
2. Patient involvement initiatives should follow IAPO’s guidelines
which incorporate the following:

 Robust and transparent mechanisms to ensure that patient views
are acted upon, not just recorded
 Inclusion in initiation, design, implementation, communication
and evaluation of initiatives
 Practical, psychological, financial and educational support for
participants
 Varied methods to reach underrepresented groups and to gather a
diversity of views
3. Patient involvement should occur whenever decisions are being
discussed which will affect patients’ healthcare or lives
including, but not restricted to, the following areas:

 Expert committees (e.g. ethics committees, reimbursement
committees, governmental advisory committees, healthcare
prioritisation and resource allocation committees)
 Regulatory processes
 Facilities design and development (e.g. hospital construction or
refurbishment)
 Education and training programmes design (e.g. for health
professionals)
 Research development (e.g. clinical trials design)
 Care and treatment guidelines design
4. All patients’ organizations should insist on involvement in all
relevant health, economic, social and other policy-making where
decisions will have an impact on patients’ lives.

Popularity: 21%  Posted in International Ix
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IDEO-CHCF-IxCenter Report: Robust Ix Innovation Design & Safety-Net
Populations
-------------------------------------------------------------------

By Josh Seidman, on October 15th, 2009 0
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.

Popularity: 25%  Posted in Engaging Consumers, Innovation, Patient
Stories, Research, Safety-Net Populations
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Ensuring a Consumer-Centered Evolution of Health 2.0
----------------------------------------------------

By Josh Seidman, on October 7th, 2009 4
aneesh-chopra-on-ix-at-h20-san-fran-oct-2009-rezied.jpgWhen Obama
Administration Chief Technology Officer Aneesh Chopra started his
keynote at today’s Health 2.0 Conference in San Francisco, he began by
mentioning the work that I did when the two of us were at the Advisory
Board Company (that’s him there pointing to me), where I first began
experimenting with the concept of information prescriptions. That came
out of a two-year project (1999-2001) where we developed in-depth
consumer health content. Just as (or maybe more) importantly, we
shadowed patients and clinicians in hospitals and clinics and
conducted dozens of structured interviews with people with diabetes
(and their families).

The first panel that followed Chopra, I saw some cool tools demo-ed,
but I didn’t get a sense of whether they truly support
patient-centered care and meet consumers’ real health needs. After the
panel on “Clinical Groupware and the Next Generation of
Clinician-Patient Interaction Tools,” I asked the question:
“How did you collect information from consumers in advance of
developing your applications? Did you do focus groups, structured
interviews, or direct ethnographic observation to understand what
tasks consumers really want to accomplish? And, at what point in
the development process, did you do that critical research?”

Only one of the panelists chose to respond to the question (I think it
was Arien Malec, VP, Product Management, Relay Health, but I’m not
sure). His answer was somewhat vague (compared to my rather specific
question), with the exception of discussing how they incorporate user
feedback they receive after the deployment of tools. Although I agree
that user feedback (a core part of the Health 2.0 model) is invaluable
for refining tools, it is a fundamentally different part of the
research & development arsenal. And, more to the point, it was not an
answer to my question.
So, when (following an excellent “The Patient Is In” session) I
moderated the “Search & Content” session that featured six different
Health 2.0 demos, I decided to keep asking the question until I got an
answer that satisfies me. After all, the main reason that I could see
for creating a panel with the diversity of demos covering all of
search and content was because they basically address how we can help
consumers get the right information at the right time to meet their
decision-making and health management needs (basically colloquial for
information therapy). I figured that I might get a better answer if I
re-framed the question:

“What did you do in advance of building your technology to ensure
that what you were building met specific consumer needs?”
I admit it was a loaded question in that I have a strong bias. Before
investing millions of dollars in product development, I believe that —
if the goal is to develop consumer-centric tools — every company
should begin with some combination of these patient-centered research
approaches:

Consumer surveys
Focus groups with patients and families/caregivers

Structured, extensive interviews with consumers
Shadowing of patients and clinicians

Direct, ethnographic observations of consumers in the settings
 where they “do” most of their health care (e.g., their homes,
 workplaces, schools, etc.)
If we want to meet Chopra’s call for robust innovation that transforms
our economy and the health care delivery system, we first need to
identify the health tasks that consumers want to accomplish. The best
way to figure that out is to get answers directly from consumers
before we write a single line of programming code.

Popularity: 28%  Posted in Engaging Consumers, Health 2.0 Space,
Innovation, Inside the Beltway
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Forcing Ix on the System: Video Ix for My 5-Year-Old
----------------------------------------------------

By Josh Seidman, on September 30th, 2009 5
Despite the personalized attention I get in our pediatrician’s office
and their general responsiveness to calls — both to their own nurse
call line and during on-call hours — I find certain aspects of this
20th-century practice frustrating. The most important ongoing issue
relates (not surprisingly) to the one chronic condition we have to
manage: The intermittent asthma of my youngest son, 5-year-old Ryan.

Back in April, at the height of Washington’s spring allergy season, I
wrote about my frustration in feeling unprepared to help Ryan in
crisis. After another asthma flare-up two weeks ago when Ryan had a
mild fever, I decided that I needed to take a more active caregiver
role. It was time to become an “im-patient consumer.”
The first need to address was the idea I had back in April —
empowering Ryan and his family to feel confident in using an inhaler
and spacer when he needs albuterol (rescue medication) immediately.

Step 1: I ordered a Flip Video cam via Amazon.
Step 2: I told Ryan that we were going to the pediatric
allergist’s office and I’d videotape the doctor showing Ryan how
to use the inhaler. To which Ryan responded with high face
lighting up, “Cool!”

Step 3: At the outset of the visit, I explained the issue to our
doctor and I instructed him that I would videotape him
demonstrating use of the inhaler and spacer to Ryan.
Step 4: I filmed two approximately 30-second video segments —
first, facing the doctor and second, facing Ryan.

Step 5: When I got home, using FlipShare, I quickly emailed the
videos to my wife and Ryan’s grandparents with copy to me (the
people most likely to be present when Ryan needed help with his
asthma).
Step 6: I sat down with Ryan to watch the videos. I don’t know
about your 5-year-olds, but with mine, just about the only thing
cooler than playing on Daddy’s computer is watching video of
himself on Daddy’s computer.

Step 7: We’ll continue to watch and practice until he (and his
parents) feel comfortable that he can use the inhaler well enough
to get the medicine he needs to help him breathe more comfortably
when he’s wheezing and coughing. Ryan may not yet be able to
define “self-efficacy” but we’ll all know it when we see it.
Result: I have an empowered 5-year-old at home now.
Popularity: 26%Posted in Patient Stories, Video Ix
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More Insights from Neil Calman on HIT Meaningful Use
----------------------------------------------------

By Josh Seidman, on September 23rd, 2009 1
At the request of Neil Calman, I had the opportunity to speak in
Albany last week at the New York State AHEC (Area Health Education
Center) System Advisory Board meeting on “Health Care Reform & the
Health Information Technology Workforce.” The trip was well worthwhile
for many reasons, certainly not the least of which being the chance to
soak up more wisdom from Neil Calman, MD, CEO of IxAction Alliance
member, the Institute for Family Health (IFH).

Neil — a member of the Health Information Technology (HIT) Policy
Committee advising HHS on the implementation of HIT provisions in the
American Recovery & Reinvestment Act — set up the discussion about the
all-important definition of “meaningful use” of electronic health
records (which will determine whether physicians are rewarded with
incentives for HIT adoption). As others have stated, Neil made clear
that “It’s not about the technology.” Rather, he said, “It’s about the
handshake between HIT and health care reform.”
Neil then proceeded to give a great example from his own delivery
system of the difference between HIT implementation and meaningful use
of HIT. When IFH implemented its EHR in 2002, it experienced no
improvement in the rate at which its older patients got a pneumonia
vaccination. However, IFH added an electronic reminder system to its
EHR in November 2003, which produced an immediate and sustained spike
in vaccination rates that continues to hover around 80%.

Neil discussed other examples of meaningful use and highlighted that
what it’s really about is changing the way clinicians practice.
Although many clinicians bemoan the transition from handwritten, paper
progress notes to electronic notes available for the patient to
review, Neil emphasized that this modern form of documentation can
produce important improvements in care delivery. This transparency (an
important goal by itself) does much more than just create an
environment of participatory medicine for its own sake.
Neil pointed out, “When you change what you write in progress notes,”
to make them appropriate for your patients’ consumption, “you drill
down further to the real reason” for sub-optimal care. In the past
when a patient wasn’t taking a new medicine, an IFH clinician may have
just written in the progress notes, “Patient non-compliant.” But such
a statement obviously begs the question: Why? So the doctor now will
ask, and the answer often provides important direction for improved
care delivery: “Patient took first 2 pills and they made him sick.”
Now, the clinician and patient know what they need to discuss in order
to improve adherence to a medication regimen.

That’s what meaningful use is all about. Taking apart HIT, we’re not
just changing the T (technology), but actually fundamentally changing
the I (information) in order to improve H (health).
Popularity: 29%  Posted in Decision Support, EHRs, Inside the Beltway,
Participatory Medicine
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IDEO and Ix Innovation Design, Continued
----------------------------------------
By Josh Seidman, on September 14th, 2009 0

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?

Popularity: 29%  Posted in Behavior Change, Engaging Consumers,
Innovation, Ix Strategies
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