You MUST have patient voices at the table during the design stage if you want to end up with a patient centered healthcare system.

It has been two years since I sent this to the then head of ONC - David Blumenthall in response to a query - where in the HITECH ACT does it mention consumers and "we don't want any unfunded mandates" Although I was flabergasted I understood that they were implementing the ACT and didn't see the big picture yet.  Thankfully, now that we have new leadership at ONC with Farzad I think it is worth repeating. (and I might update it in a future post) since this is part of the core philosophy that drives my passion.

You MUST have patient voices at the table during the design stage if you want to end up with a patient centered healthcare system. Not just forums for patients to give talks AFTER the tools are in place or consumers helping to "sell" it but consumer centered designers who are skilled at co-designing the systems, tools, workflows to meet patients needs and then vetting it with actual patients. Not just one or two who are nationally recognized but at the local levels with real people

Ever since the Institute of Medicine’s 2001 report, Crossing the Quality Chasm: A New Health System for the 21st Century, we have been working towards a patient-centered care health care system that among other things: “establishes a partnership among practitioners, patients, and their families, to ensure, that patients have the information, communication, education and support they need to make decisions and participate in their own care."

The Institute of Healthcare Improvement also identified  the “critical importance of information sharing and decision-making” as one of the four core concepts of patient-centered care.“ You need to include “patients on health care improvement and design teams” so that they “have the tools and support they need” to be empowered, educated, informed consumers and “effectively participate in their care and decision making.”

There is strong support for this patient-centered model in Section 3001 of the HITECH portion of ARRA.  The National Coordinator is to develop a “nationwide health information technology infrastructure that allows for the electronic use and exchange of information that”-- ‘(2) improves health care quality, reduces medical errors, reduces health disparities, and advances the delivery of patient-centered medical care; ‘(5) ensures the inclusion of meaningful public input in such development of such infrastructure;‘(6) improves the coordination of care and information.

In an ideal “patient-centered system we would design our systems around patients and their care communities”; rather than around clinicians, doctor offices and centered on the needs of the system itself.

One health care system Group Health Cooperative has the highest EMR adoption rates in the US, (50% of 540,000) and they accomplished this by using a collaborative model of consumer engagement at each stage of design, implementation, adoption and optimization. Patients were able to “write” to their chart via email and this helped pull the providers forward through the adoption stage.

>The resulting “Shared Care” EHR model (vs a fragmented EMR/PHR) prioritized consumer needs (convenience, access to information).  In some family practices up to 50% of all encounters are now happening remotely via technology, with clear cost savings and improved patient satisfaction scores.

When patients are fully informed of their treatment options: 1)they generally select the least invasive or costly on; 2)  it improves  patient understanding of their health care options; 3) it reduce the rate of procedural interventions, and 4) it increases patient satisfaction with the care provided and confidence in the decisions they make." States Explore Shared Decision Making, Kuehn, JAMA.2009; 301: 2539-2541.

Consumers aren’t waiting for EMR’s or “Health IT. ” They are already using information technology to research health care concerns and find support  in increasing numbers. Pew Research  /California HealthCare Foundation In order to end up with a patient centered health care system you must engage all of the stakeholders  voices especially consumers  at each point in the process.

BACKGROUND; Many of you who know me realize that I helped stand up the National eHealth Collaborative a few years ago (before ARRA and HITECH) and the only two seats that are dedicated are reserved for consumers or consumer advocacy organizations. At the time Rob Koldner, a staunch patient centered design advocate was the head of ONC and we were on track to develop a consumer advocacy position in house but when he left so did the position and new leadership didn't see where in the funding legislation where it even mentioned consumers.. I was in fact asked where it did and the above is the one page response. Thankfully now that Farzad is running ONC we are seeing a shift back towards including the consumer voice but what we really need is a broader concept - consumer centered design.. Not only speakers but creators.

Patient Centered Care and Health IT

Dear Dr. Blumenthal (head of ONC)

1) REASON FOR NOTE - Congratulations on your amazing ability to do so much in so little time and your appearance on the HHS web cast last week with Secretary Sebelus. You asked me to keep in touch but I have held back until now since I know how many different stakeholders needs you are responding to but I concerned that ONC is making a very classic error that we often see in complex software implementations, so I am going to expend some of my very limited social capital and share with you what I see.

2) PATIENT CENTERED CARE SYSTEM - In order for us to have a patient - centered health care system we need to not only "listen" but invite consumers to design and co-create the systems that support that value. You can't simply "listen" to them, you need to engage them as co-creators and not simply ask them to adopt a system after it is ready for delivery. It is similar to putting consumers on hospital patient safety committees versus asking someone who has MRSA if they are taking their meds.

3) FAILURE TO ENGAGE ALL STAKEHOLDERS - One of the very well documented reasons that large complex software implementations fail is because the leadership doesn't identify and "engage" a key stakeholder group early on. I hope most people at ONC realize that it will be our ability to communicate and engage both providers as well as consumers (clients) and not the technology (certification, standards, open source, etc) that will make or break this project and out ability to meet the goals of the authorizing legislation.

4) LESSONS FROM OBAMA CAMPAIGN - At its core this is a political campaign and I am sure you realize that we never would have elected President Obama nor brought about change unless we had pro-actively asked people to be involved all throughout the campaign. It wouldn't have worked if we had simply wanted until it was close to the time to vote and then asked them to support us and we need to use that same technique for health IT or we risk losing control of the message.Although very few congressmen voted for the stimulus package, health information technology has pretty broad political support thankfully so it gives us a chance to work in a bi-partisian manner and reach out to as many patients and consumers during the design stage as possible.

5) ASK - So please consider implementing a matrix approach that includes a strong consumer engagement and communication piece that cuts across all of your program planning now instead of developing a system, presenting it to consumers and then asking them to support it.

Sherry (no I didn't send it)

My Right to My Health Data

People should have the right to full access of our health care data, to know the source of the data, and the right to share our data with people and health care providers that we chose to.

I also personally believe that we should have the right to share in any financial compensation that happens when our data (even de-identified) is sold. Cerner one of the largest EMR's is already selling data to drug companies just one small part of the multi-billion dollar medical data mining industry).

I know how much money (data) I have in the bank and my investment accounts, I know who has access to it, I can download that data from any number of different accounts and even move the money around online, I can supplement my financial data from multiple sources with my own cash transactions and I can then use that new combined data to create a legal document for the IRS.

Why can't I do that with my medical records? Access and download my clinical data from an EMR, import it into a PHR and then send all of it to someone new? Why for that matter can't I just have it on my phone and shake my iPhone at a new provider and give him my health cloud the same way I share business cards now. We have the technology and we have the political will, now all we need is a health data policy. Well as of today we have one.

A grass-roots coalition of consumer advocates, former patients, providers, experts in medical informatics, policy gurus, through leaders and health care co-creators who have come together to raise up our collective voices and create a collaborative statement on the right to our own health data.

United States—June 22, 2009—Today, thought leaders across health care are collaborating to launch www.HealthDataRights.org and unveil a shared statement to ensure patients’ rights to access and share their own health information.

The site, designed to give people a voice in preserving their right to take responsibility for their own information and care, features a Declaration of Health Data Rights that reads as follows:

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

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

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

With broad support across the entire health industry, the Declaration of Health Data Rights and perspectives on what it means will be written about today across the blogosphere, including:

Already endorsed by 80 different organizations like 23andMe (Linda Avery) , Association of Cancer Online Resources, Center for Democracy and Technology, Dossia, DrGreene.com, FasterCures, Google Health (Missy Krasner ), Keas (Adam Bosworth) , Navigenics, O’Reilly Media, Partners Healthcare, PatientsLikeMe (Lori Piscatelli Scanlon, Joe Lind, Jeremy Weiskotten) , TEDMED, WebMD and of course now the Alliance4Health (which represents the 300,000 people who buy their own health insurance in Washington) and people like Alan Greene (Dr Greene), Peter Neupert (Microsoft - Health Solutions Group), Tim O'Reilley (O'Reilley Media), Blackford Middleton, MD (Partners Healthcare), Dave deBronkart (epatientDave) and many others.

According to recent news reports between 20 and 40 Billion will be spent on health IT in the next couple of years to ensure that "providers" adopt health information systems. Many patients, consumers, family members, advocates and other "health co-creators" have been working hard for the last year to ensure that our voice is strong and we are bring the same principals of engagement and transparency that are becoming the new norm for Government 2.0.

Meaningful Use - Is the Patient in the Room?

Meaningful Use Draft Definition

According to multiple sources

"David Blumenthal, MD, National Coordinator for HIT, will make public a “first draft” of the definition of “meaningful use” on June 16th when the ONC HIT Policy Committee meets. After releasing this first draft, the ONC will compile public comments as well as input from both the HIT Policy Committee and the HIT Standards Committee and will place a definition of “meaningful use” in a regulation, called an “interim final rule,” to be published in the Federal Register by December 31, 2009.

Is the patient in the room? What is their view of Health IT and "Meaningful Use"?

Since the Policy Committee will be announcing a meaningful use "draft" tomorrow I just wanted to ensure that we proactively include the patient/consumers voice in this process. One of the primary reasons that complex software system implementations fail is because you fail to identify, educate and engage a critical stakeholder (like patients) at the beginning of the change management process. If you really want a high quality, safe, effective, patient centered health care system we need to pro-actively include their voice in the process.

Are we for example including the needs of the 1 in 9 women, like my Mom, who will be diagnosed with Breast Cancer in meaningful use? What form does interoperability take for someone with a chronic condition vs for the harried young parent who needs vaccination records for the kids to go to camp? Are we looking outside of the walls of the practice where 90% of health care takes place?

Building on the work that came out of "A 2020 Vision of Patient-Centered Primary Care" (Journal of General Internal Medicine, Oct. 2005), and the plan advanced by The Commonwealth Fund's Karen Davis, Ph.D., Stephen C. Schoenbaum, M.D., and Anne-Marie J. Audet, M.D., I would like to gently offer the following draft from a patient point of view.

Attributes of Patient-Centered Care and the role of Meaningful use of Health IT to achieve that.


1. ACCESS - Systems are designed with consumers in mind and provide expanded access to care and 24/7 access to information. Ex) Patients can easily make appointments and select the day and time using mHealth or web based tools but aren't expected to become the medical professions admins. E-mail and telephone consultations are offered and telemedicine access to specialists is available in rural areas
2. ENGAGEMENT - Health IT is designed so that patients the option of being informed and engaged partners in their care. Ex) Provide information on treatment plans, preventive and follow-up care reminders, access to medical records, assistance with self-care, and counseling both in person and remotely via technology like the web, text messaging or mobile health. Patients, consumers and family members will be pro-actively included in the design, development and use of any health information technology system.
3. CLINICAL INFORMATION SYSTEMS - support high-quality care, practice-based learning, and quality improvement and are developed with patients needs in mind. Practices maintain patient registries; and adapt treatment practices based on patients differing needs for information, treatment. Patients have easy access to lab and test results; and receive text message reminders , decision support, and information on recommended treatments along with their providers if they desire. Ex) Clinical information systems in the form of an EMR are integrated with personal health records (PHR) in the same way that you can download your bank statement into quicken and then create a new document.
4. CARE COORDINATION - Specialist care is coordinated is with the patient and his/her family, and systems are in place to prevent errors that occur when multiple physicians are involved. Post hospital follow-up and support is provided.There is a free flow of communication among patients, physicians, nurses, and other health professionals. Duplication of tests and procedures is avoided and cost data is shared with patients. HIT will include the use of registry's, clinical alert systems and quality outcomes to monitor our care individually as well as for population health.
5. QUALITY AND FEEDBACK LOOPS- Practices take advantage of patient surveys to learn from patients and inform treatment plans and patients have access to quality and outcome measures for their medications, providers, hospital and procedures. The system will no only rewards physicians for improving clinical performance, but also for conducting patient surveys and acting feedback to improve care.
6. LOCATION - Tools will allow care to be be delivered where we live via mobile phones, sms, the web and not solely in a providers office
7. SAFETY, SECURITY AND PRIVACY - ealth IT can be used meaningfully only if the caregiver and patient trusts it to deliver the services and information he/she needs to help make sound decisions at the point of care, and if the patient trusts it to protect his privacy. We expect that the systems will keep our data secure but when desired liquid so we can easily share with other's we designate. We retain the right to continue to receive care even if we opt out sharing our data. If sharing our data gives it value for secondary users we expect to share in any compensation.

It is just a quick draft as an example of how to lay the template of patient - centered care over the meaningful use discussion.

According to John Halmakla The ONC HIT Policy Committee will discuss a matrix of meaningful use, standards, certification criteria, and meaningful use measures at their June 16th meeting.

The Quality Workgroup will review this matrix and edit/amend it with appropriate accepted/recognized standards over the next 60 days.

I'm confident that CCHIT will continue to be the leading HIT certification organization in the US, but its certification criteria will evolve. Th

The Certification Commission on Health Information Technology (CCHIT) will also have Town Calls Scheduled to Gather Input on New Paths to Certification under ARRA on June 16th at 1 p.m. ET
“New Paths to Certification: Dialog with the Open Source Community”
Dial-In Number: (866) 900-5706
Conference ID: 15249954

and another one the next day June 17th
Wednesday, Jun 17, 2009 11:00 AM (EDT)
“New Paths to Certification”
Dial-In Number: (866) 900-5706
Conference ID: 15316708

Micorosft Connected Health Conference

Live tweet stream via coveritlive Remember you can make comments here and not clutter up your tweet stream. #MSFTCHC

Patient Centered Care and how Health IT lets doctors listen

Healthcare Reform Should Start with Primary Care

As I have been advocating for the last year technology actually allows medical providers more time to spend with patients, lets them provide better care that is patient focused and results in higher quality outcomes while increasing their incomes in most cases.

Today on the front page of the business section of the New York Times is a great article discussing many of the same topics.

doctors spend more time with patients, emphasize prevention and education to keep them healthy and can handle many medical problems without referrals to specialists.

Here in Seattle I belong to a clinic that uses the Medical Home model and my former employer Group Health Cooperative is rolling out the same model to all of their primary care Physicians and Providers across the State. You can read about those two models in a great article in the Seattle Times. Technology allows small practices to compete with larger multi-speciality centers by putting the tools right into the hands of providers at the point of care.

With big pharma and insurance pulling out the stops to block the public option it would make sense to provide everyone with primary care under this new model and leave insurance to cover the high cost episodic care.

HealthCamp Nashville Tweet Stream

Time Out - is the Patient in the Room? in the Health IT conversation

Did you see this morning? I posted a quick response to it. The only way to achieve a high quality, effective, safe, patient centered system is to start and center the conversations and the design process around patients from the beginning.

Sustainable Health and Health Transformation Community

Often I wonder who to weave all of my passions into one event. Sustainable development, grass-roots engagement, health information technology, wellness, politics.

Today I coined a couple of new terms "Health Transformation Community" and Sustainable Health to embody the wholistic nature and focus on cultural change that health IT plays a small role in. I hope to hear who that resonates with the rest of you.

All Stakheolders voices critical to success of Health IT

I am going to take a bit of a risk and use some of my limited political capital from the grass-roots to highlight an increasingly over-looked key to the successful implementation of ONC's agenda. The succes or failure of this IT project like all IT projects hinges on our ability to combine strong national sponsorship with an equally strong communication strategy that engages all of the stakeholders involved - providers and patients, vendors and entreprenuers, public and private, rural and urban.

Quick Observation - In addition to 1) outstanding leadership, 2) high quality technology, 3) standards and 4) policy it is critical that we recognize the 5) fundamental role that stakeholder engagement and 6) communication will play in the success of this type of project. That includes not only the people (providers, staff) who will use health IT and those who will benefit from these systems (patients, consumers), but the broader community as well. It also takes into account the unque needs that different types of consumers and providers have from mental health to surgeons and not assume that physical location is what defines a "population"

Individual EMR implementations are a microcosm of what we are about to do on the National stage and those of us who have done this for years know how that this has little to do with technology and everything to do with change management.

One unique difference is that unlike large hospital based systems we are essentially about to embark on a media campaign to engage people where many of them don't believe that Government should be in the business of health care. Twice in the last week for example, I was on conference calls in which providers ask what would happen if they simply stopped treating medicare and medicaid patients instead of implementing now.

In England it was consumer lack of trust and providers hesitancy to disclose PHI that stopped the projects not technology. We also need to address the business case as much as define what "outcomes matter" but like all young IT companties we are top heavy on the IT and Medicine side of the house and have more opprotunity for growth on the marketing and communication side.

Although there isn't a great deal of academic researching into the success factors for successful EMR's there is a lots of research from other complex system implementations. We know for example that they often hinge on a couple of key factors for success.

1. Strong project sponsorship - ie engagement of both those directly impacted by the technology (providers, staff) as well as those that receive services from them (consumers, patients, community)
2. Communication Strategy that precedes the technology implementation - People can adapt to and support big changes if they understand the importance and the big picture. It is critical to develop a collaborative team approach to bring about organizational change.
3. Clear goals that take into account both the current state and expected outcome. It is critical that there is a strong connection and two way communication between the end users and the external implementation team.

I believe our our National HIT agenda needs to have a pro-active community engagement strategy, a clear communication plan and measurable goals in these areas right from the start to be successful. We are essentially about to engage in a massive consumer marketing campaign in which we are going to ask people to buy a government mandated product and implement it in their private business between them and their patients.

In England they have struggled for years not only because of technical problems but because consumers and providers didn't see the value to them, don't trust the government's role in it and don't feel like they were asked to participate in the design and implementation process.

The new ONC policy and standards committees include a broad range of stakeholders but they questions they are asking are provider centric. The entire discussion of meaningful use has revolved around their needs vs the outcomes that consumers want. If we are to have develop a transformative health care system with patients in partnership with providers then they need to have an equal voice in the design and even funding of this endeavor.

Meaningful use to a consumer includes things like email contact, real time lab results, health care anywhere vs a medical home, customized information that is relevant to their conditions and takes into account their language and education. It includes high quality care for their encounter not by clinic and it ensures that their health care history is kept in the highest confidence.

We really need a bi-partisian, non political body to spread head a massaive grass roots community engagement and communication plan. Clearly we need someone (the NeHC perhaps) that people trust who isn't a vednor or consultating firm to step into this role as national convenor for this project.