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.