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)

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.

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.

Meaningful Use of Health IT - a Consumer Perspective

In order for a health IT system to have real value it must include the voice of the consumer in its design, policy and use. Patients expect physicians to be responsive to their needs and preferences, to provide them with access to their medical information, and to treat them as partners.

Building on the vision of patient centered care, we expect

1) Participation - we expect that patients, consumers and family members will be pro-actively included in the design, development and use of any health information technology system.

2) Location - we expect that the tools developed will be delivered where we live via mobile phones, sms, the web and not solely in a providers office. A shift from a "medical home at the doctors office" to a new perspective that puts the patient / consumer in their home with easy access to health care resources.

3) Information and convenience - real time access to information, including not only our medical records, labs, clinical notes but the ability to both share and control the sharing of that information with other providers, to designated family and our own personal health records seamlessly.

4) Engagement - The ability to enter "patient notes" in the clinical record alongside nursing or physician notes (flagged as patient entry). Email access to our care team as well as questions answered online and via the phone with full participation in treatment plans and follow-up.

5) Safety - we expect our providers and health care facilities to use registry's, clinical alert systems and quality outcomes to monitor our care and to include anyone who desires it to receive clinical alerts customized for their needs as well.

6) Security and Data Liquidity - we expect that the ability to share our medical information will be as secure and as easy as the banking system is and that the value of the data (if sold) will be shared with us.

7) Feed-back loops - we expect that our providers, health care systems and ancillary providers will have feed-back loops and patient satisfaction systems built in.

8) Quality - we expect to have access to quality reports on treatments, facilities and providers with no risk from patients participating.

Sherry