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

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

Kaiser Permanente released two new ads as part of its ongoing “Thrive” campaign. Although both are quite entertaining, the one that struck me most is titled, “Connected.” Much has been made of Kaiser’s multi-billion dollar investment in health information technology (HIT), but perhaps what has received too little attention is how they structured it.

What the “Connected” ad does masterfully is to visually, technologically, and audibly demonstrate that all its technological investment has its member at the center and is focused on facilitating connections for that member. Connections to data, information, clinicians, and ultimately to everything that a member might need to manage their health and “thrive.”

This should not come as a surprise. When Kaiser launched their Epic implementation several years back, they decided to call it “HealthConnect.” Now, their vision is playing out among the more than 3 million Kaiser members taking advantage of that connectivity.

The connection theme deserves more attention in the national debate on reforming the health care delivery system. Connections among people and information can be incredibly powerful in enhancing clinician-patient relationships, creating truly patient-centered medical homes, and facilitating participatory medicine.

It’s important to note, however, that connection is about far more than simply creating electronic links between people and data. In order to maximize the connection potential, the data need to be translated into understandable, meaningful, useful information for each user. That information needs to be accessible in a convenient way for each person, and it must be proactively delivered to them in a just-in-time fashion in a way that engages them to initiate effective actions.

When we put all that together, those connections can create effective, efficient health care delivery.

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.

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.”

Kevin Sack has a nice piece in today’s New York Times titled, “Health Co-op Offers Model for Overhaul” about the role that cooperatives might have in the health care reform debate. “Co-ops” suddenly are a hot topic in Washington, sparked by loose proposals from Senator Kent Conrad (D-ND) that are trying to bridge the ideological divide that has formed between proponents and critics of a public plan option in a comprehensive health reform bill. Senators like Conrad view co-ops in a favorable light largely because of perceived corollaries with rural energy co-ops in places like North Dakota.

But the article is really about Seattle-based Group Health Cooperative (a founding member of the IxAction Alliance), one of the country’s best examples of progress that can be made by implementing health information technology (HIT) with a patient-centered care lens. Sack addresses this head on when he quotes Group Health’s leader:

“There’s a kind of accountability to the patients in our system,” said Scott Armstrong, president of Group Health. “And when you bring the principles of a cooperative to bear, patients feel responsibility for holding the system together and for their own health.”

Five years ago, I did a site visit at Group Health and spent time with administrators, clinicians, and — perhaps most importantly — with the consumer-elected Chair of the Group Health Board of Directors. In the resulting best practices white paper, “The Arrival of 21st-Century Health Care: Group Health Cooperative Reengineers Its Delivery System Around Information Therapy and Patient-Centered Informatics,” the principles of consumer governance and empowerment came through loud and clear:

“Group Health’s founders established the HMO on cooperative principles and envisioned a three-pronged approach to its operational structure:

• Governance resides with the members through the consumer-elected board.
• Managers bear accountability for administration of the health plan.
• Physicians have responsibility for medical decision making in their independent but exclusively contracting group practice.

The founders created this model to facilitate an egalitarian approach to how medicine and health care should be run and consumed. They sought to democratize the practice of medicine and to create a health care delivery system that was completely focused and centered on the needs of its members.

Now, 21st-century technology has facilitated execution of that vision. ‘It’s the realization of a dream,’ said Debbie Ward, Group Health member and former chair of its board of directors.”

Indeed, as has been stated here and by many others recently in the debate over “meaningful use” of HIT, new technologies should be deployed as tools to achieve a patient-centered care delivery system vision that supports more effective and efficient care. That approach is primarily what has facilitated Group Health’s success in achieving many of the advances in participatory medicine, chronic care management, and implementation of the patient-centered medical home (PCMH) that Sack describes throughout the article. In fact, Group Health has been working on PCMH models of care delivery for many years before it became quite so fashionable, but its patient-centered HIT strategy created a platform for taking PCMH to the next level.

I’m not quite sure what to tell Senator Conrad. Even though the details of his co-op plan remain unknown, I’m quite confident he won’t be proposing a series of Group Health-type arrangements in which the country’s doctors all report to their patients. And I don’t know how much good it will do just to have co-ops acting as insurance purchasers (they bring back memories of the infamous HIPCs — health insurance purchasing cooperatives — that were all the rage during the 1993-94 health reform debate). On the other hand, if they provide a political vehicle for moving us substantially further down the road to universal coverage and are paired with other major advances in patient-centered care delivery, I’m certainly not going to complain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For the past several months, the Center for Information Therapy (IxCenter) has been working alongside other consumer advocates to guide the HHS definition of “meaningful use” of EHRs to include consumer access to meaningful information. Part of that collaboration has been with the Consumer Partnership for eHealth (CPeH), which has brought together many organizations dedicated to advancing a patient-centered care delivery system. We also believe it’s important to build a meaningful use definition off of robust definitions of patient-centered care, such as that proposed recently by Don Berwick.

With the decisions on meaningful use now being hammered out by the Office of the National Coordinator (ONC) for HIT with input from the HIT Policy Committee (with detailed guidance from a meaningful use workgroup), CPeH has developed a consumer pathway to meaningful use to help inform the discussions.

Here’s an overview of our recommendations:

• To ensure care is comprehensive, coordinated, personalized and planned:
  • By 2011:
    • Care summary is generated and shared with the patient and other authorized providers and family caregivers after every visit or
      discharge.
    • Reminders about preventive services, medications, necessary/routine tests, and follow-up care are sent to patients via their preferred medium
  • By 2013:
    • Prompts and key information (patient preferences, health goals, functional status, preferred language, advance directives and social situation) are used to individualize and customize care
    • Patient generated data is incorporated into the clinical context for individualized care
    • Connections are made to community resources
• To ensure patients and their caregivers are partners, making informed, shared decisions:
  • By 2011:
    • Patients have electronic access to the lab results, medication lists and problem lists
    • Care summary (see above)
    • Patients are connected to resources that help them understand their medical information in the context of their specific health needs
    • Providers make available shared decision making tools to promote partnership in care and treatment decisions
  • By 2013:
    • Patients have real-time electronic access to their medical record along with linkages to tools that make the information meaningful and useful to them
    • Patients have access to evidence-based decision support tools that enable informed choices tailored to their preferences
• To ensure transitions between settings of care are smooth, safe, effective and efficient:
  • By 2011:
    • Care summary (see above)
  • By 2013:
    • Referrals are made to online patient coaching and/or other self-care management tools
• To ensure patients can get care when, where, and how they need it:
  • By 2011:
    • Patients are able to use secure messaging or email for more timely and beneficial communication with their providers
    • Personal health records (PHRs) or other consumer tools are populated by providers and are easily portable
  • By 2013:
    • Patients are able to use online scheduling for more convenient access to their care providers
    • Providers use remote monitoring to manage patients with chronic illnesses in the least restrictive way
    • Electronic tools provided by the health care team are accessible to people with visual, hearing, mobility, cognitive, and other impairments (and in multiple languages)
• To ensure patients and their caregivers are participants in continuous quality improvement:
  • By 2011:
    • Information about patients’ experience of care is collected electronically and used to improve
    • Quality data are electronically generated, aggregated and publicly reported in ways that are meaningful for consumer use
    • Information about race, ethnicity, primary language, and gender is collected and used in ongoing efforts to reduce disparities
  • By 2013:
    • Data regarding cost and the clinical quality of care are electronically collected and publicly reported for consumer use
    • Outcomes measures are reported stratified by race, ethnicity, primary language, and gender to spur disparities reduction

We firmly believe that effective, meaningful use of HIT can help create a platform for a better, more efficient health care delivery system, but only if we design it to meet consumers’ needs and preferences at the right time, in the right setting, and in the right way. The elements above will take us a long way in getting there.

For those interested in the detailed recommendations from CPeH, please contact me directly or leave a note in the comments section.

As countless health care experts have said, comprehensive legislative health care reform requires attention to access, cost and quality issues. While much of the public debate grows around the best strategies for coverage expansion, new legislation to deliver patient decision aids offers a vehicle for improving the health care delivery system.

On May 21, Senator Ron Wyden (D-OR) introduced S.1133 — co-sponsored by Senator Judd Gregg (R-NH) — the Empowering Medicare Patient Choices Act, which was matched on the House side with H.R.2580 by Congressman Earl Blumenauer (D-OR). The main purpose of the legislation is to expand the use of shared decision making (SDM) in Medicare to help beneficiaries — in collaboration with their clinicians — make more informed treatment decisions based on an understanding of available options and each individual patient’s circumstances, beliefs and preferences.

SDM has an extensive scientific base demonstrating its potential for much better, more patient-centered care and reduction of unnecessary, costly procedures. For those interested in more background on SDM, the best resources are (in the US) the Foundation for Informed Medical Decision Making (founded by luminaries Jack Wennberg and Al Mulley) and (internationally) the Ottawa Health Research Institute (with SDM leadership by Annette O’Connor, the Tier 1 Canada Research Chair in Health Care Consumer Decision Support…don’t you think the US could use someone with that title?).

This program creates a three-stage phase-in of patient decision aids into Medicare. Phase I involves a pilot, during which an independent entity would create a process for developing consensus-based standards and a certification process to ensure decision aids are effective and provide unbiased information.

During Phase II, providers would be eligible to receive reimbursement for using certified patient decision aids. The final stage involves requirements to ensure that all Medicare beneficiaries receive patient decision aids prior to receiving treatment for a preference-sensitive condition. At that point, reimbursement can be reduced by 20% for providers whose patients are not getting their information therapy (Ix).

Based on estimates from Lewin, full SDM implementation just in the 11 conditions this bill targets would save $4.1 billion in 2010 and increase to annual savings of $7 billion by 2017. The program would distribute the savings in three ways:

• 50% to participating providers based on their performance
• 25% to expand provider participation through funding of SDM centers and providers
• 25% to be returned to the Medicare program.

The savings would phase out over time and ultimately become penalties, so there’s a nice blend of carrots in the early years and sticks later.

This federal legislation builds on innovative policy being developed in the states. Washington became the first state to pass an SDM law in 2007, and several other states — Vermont, Maine, Minnesota, and — have been working on similar legislation in 2009.

Prescribing decision aids to consumers is one of the great opportunities for achieving true delivery system improvements in quality and efficiency. These Ix tools will produce better outcomes at lower costs and result in a true participatory medicine environment. If we want to improve care delivery and have the money to cover the nearly 50 million uninsured Americans out there, we need common-sense system reforms like this one to be embedded into the broader health care reform legislation.

Nancy Shute has a nice piece in yesterday’s Charlotte Observer that summarizes “6 ways electronic medical records might make diagnosis easier and more convenient, and care safer.” An excellent writer, Nancy has done a good job of boiling down all the grandiose discussions on EHR functionality into tangible, “what have you done for me lately?” functions. This consumer orientation to EHR functionality is badly needed as we define “meaningful use.”

With every one of them, however, by attaching information therapy (Ix) to the technological function, we could substantially expand the utility of that application. So, I’d like to propose amendments to Nancy’s six high-impact apps.

1. “Skip trips to the doctor.” Yes, secure e-mail with your clinicians is a huge convenience factor, and attaching an information prescription about what to do next (or when it really would be time to come into the office) would provide additional value to the patient.
2. “Track Mom’s medical chart even if you’re in Albuquerque or Altoona.” As long as you can actually interpret what’s in the online record, that’s fine. But what if the medical jargon raises more questions than it answers. If the chart via the portal contains links to content that contextualizes the data points, you’ll feel a lot more comfortable staying in Albuquerque or Altoona.
3. “Get lab test results without having to play phone tag with the doctor’s office.” By hyper-linking the lab test results to brief explanations of what each acronym means, what the “normal” ranges are, and what it means if your values are “abnormal,” the lab values will have much more meaning.
4. “Never again drag X-rays to a specialist.” Very few lay people can interpret radiology images, so attaching the radiology report (translated into plain language) to the digital files will empower consumers.
5. “Find out if your prescriptions could have dangerous interactions, before you start taking them.” But then what? Provide some guidance to the consumer about alternatives or what questions to ask your doctor, pharmacist or other health care professional.
6. “Use your cell phone to tap into your health records.” Put everything together from above, and the more ubiquitous cell phone really will ring!

As we move forward in defining what we want out of “meaningfully used” EHRs, let’s take a page from Nancy’s book and boil these functions down into what they actually mean for the day-to-day lives of consumers. But let’s also go the extra step of making the most of the electronic opportunities that present themselves by connecting data points to content that helps all consumers use these tools most effectively.