CCHIT Meaningful Use - Consumers want outcomes that Matter and a system designed around their needs

As part of the meaningful use discussion the mostly volunteer CCHIT has issued its recommendations to ONC about how to implement meaningful use. Although they fleshed out the various pieces I will focus on the consumer section for 2011 in this blog entry only

P2: Engage patients and families

Goal: Provide patients and families with timely access to data, knowledge, and tools to make informed decisions and to manage their health.

2011 Objectives for Providers
1: Provide patients with electronic copy of- electronic access to- their health information (including lab results, problem list, medication lists, allergies)upon request
2: Provide patients• to their health information (including lab results, problem list, medication lists, allergies)
3: Provide access to patient-specific educational resources
4: Provide clinical summaries for patients for each encounter

2011 Objectives for Hospitals
1: Provide patients with electronic copy of- or electronic access to- their health information(including lab results, problem list, medication lists, allergies, discharge summary, procedures)• upon request
2: Provide patients with an electronic copy of their discharge instructions and procedures at time of discharge, upon request.
3: Provide access to patient-specific educational resources

2011 Measures for Providers
M1: % of all patients with access to personal health information electronically
M2: % of all patients with access to patient-specific educational resources
M3: % of encounters for which clinical summaries were recorded

2011 Measures for Hospitals
M1: % of all patients with access to personal health information electronically
M2: % of all patients with access to patient-specific


This model seems to assume that meaningful use of health IT is centered on the technological tools, (in this case an EMR) instead of building out a patient -centered model that views health information technology as a platform that you build services upon. It also views the EMR as primarily a data repository and mimics the current paper based work flows of the past(ie data in a chart that you put info into and pull info out of) instead of using this as an opportunity to start to transforming how care is delivered.

Simply building on the 6 goals of the Crossing the Chasm Template (a classic quality document) of building a high quality, affordable, accessable patient centered health care system I still see plenty of room for improvement.

The scope of patient centeredness expanded beyond the realm of patient–physician communication to the level of the health system care. Patient-centered health delivery emphasizes aspects of care that are important to patients, such as the convenience and timeliness of services, and focuses on outcomes such as patient satisfaction, quality of life, and functional status. In "Crossing the Quality Chasm," the Institute of Medicine endorsed patient-centered care as one of six goals for health system improvement.

I can't help but wonder why consumers aren't heavily involved in the design of the system in the same way that they are included in patient safety councils, hospital design teams and even clinical rounding in some progressive facilities? Letting us peek at our records hardly meets the most basic criteria for an empower, informed consumer who expects to partner with providers across a range of locations (hospital, doctor, therapists, home).

Consumer centered "meanngful use" should be a fundamental value that permeates every part of the system versus simply be a program goal. Consumers / patients / clients should be co-designing this process verus deciding if they want to adopting it when it is delivered to them.

For Example - Here is my draft of what a patient centered definition of meaningful use of a health IT system would include.

1. Information and convenience – For example, we want real time access to information, to our medical records, labs, clinical notes as well as the ability to make online appointments and interactive online tools that respect our - the clients time and convenience. We want smart card enabled insurance cards that containing our basic demographic information so we never have to fill out a clip board again and critical patient information on it in case of an emergency.
2. Engagement - Email access to our care team and non clinic based methods of obtaining care such as telephone encounters, telemedicine and after visit summaries that direct us to online tools and online support.
3. Safety - we expect our providers to use registry's, clinical alert systems and quality outcomes to monitor our care and patients will have the option to be included in a patient centered alert system.
4. 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 no one will sell or use our data for non direct care purposes without our express consent. (Cerner a large EMR is now selling its clients anonymized data)
5. Care Coordination and Feed-back loops - we expect that our providers, health care systems and ancillary providers will have systems in place for electronic referrals and care coordination. We want feed-back loops that include patient satisfaction systems so that patients can compare the quality and patient satisfaction scores of providers, hospitals and payers (insurance).
6. Quality - we expect to have access to quality reports on treatments, facilities, payers and providers (but not have our care limited to evidenced based care that is for large groups vs individuals.) and hospitals will implement information systems that tracks patient and family experiences, along with other hospital performance indicators and patients won't be dropped solely because they might hurt a providers quality score. We also expect disparity to be tracked and corrected.
7. 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 and we will be able to move clinical information from an EMR out into tools that consumer / clients use like PHR and mobile health applications. In the future we also want integrated systems that combine clinical systems with patient provided data as well.
8. Location - we expect that care will be delivered where we live via home visits, mobile phones, sms, the web and not solely in a providers office or hospital setting.

Is this wishful thinking? Patients at lage systems like Group Health in Seattle can email their doctors, got access to their labs before the EMR went live, can have a phone visit instead of drving to the office but still can't get their records from one Epic provider at Group Health to another one at Swedish so invest in linking them up until we have interoperability in a few more years.

Microsoft employees get in home visits to avoid a trip to the ER and small practices in NY and CA provide the same service. Consumers in Whatcom county helped design a shared PHR for people with chronic conditions and public health systems in New York can track everyone with diabetes. Very littleof this requires new technology just learning from the best of breed.

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