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.

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.

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