Mail: PatientSite is a secure server that has a secure messaging function. Whenever possible, messages are automatically routed to support staff who can best take care of a particular issue. Staff can take responsibility for tasks so that the patient and the rest of the team can know who is responsible for it. Services: PatientSite allows patients to request prescription refills, appointments, ad managed care referrals online. In addition, they can view their bills. Records: Patients can securely view their records online, including medications, allergies, problems, an all test results. In addition, they can maintain a personal health record where they can store their own information and track symptoms and physical findings. Education: Providers can prescribe Web-based educational information to their patients; these links are then incorporated into the patients’ home pages on PatientSite. Patients can also maintain their health home pages on PatientSite, adding their own links or collections of links that we provide for them.

Revisiting a Data Gaffe, Six Months On: What’s Been Learned, What’s Changed — and What Still Needs To? Dr. Danny Sands, MD, MPH e-Patient Dave deBronkart

“e-Patient Dave” deBronkart (@ePatientDave)

Danny Sands, MD, MPH (@DrDannySands) Senior Director of Medical Informatics, Cisco Primary care physician at Beth Israel Deaconess Author of the first published guidelines for doctor-patient email, 1998 Co-creator of PatientSite

Changing Nature of Relationship Knowledge Asymmetry Knowledge Symmetry Paternalism Autonomy Patient-Physician Consumer-Provider

Mail: Secure Automated routing Task assignment Services: Prescription refills Appointment requests Referrals View bill Records: Secure All CG records Upcoming appointments Meds/Problems/Results… Personal records Education: Info prescriptions Patient selected links Predefined collections Videos

Stage IV, Grade 4 Renal Cell Carcinoma My lesions matched this illustration of Stage 4 RCC on Proleukin.com, with many more. Median survival time was 24 weeks after diagnosis; I was on the way out.

My e-Patient Activity 1: Reading (and sharing) my hospital data online

The treatment worked. Target Lesion 1 – Left Upper Lobe

What next? Pay it forward. Start a blog, to teach.

January 2008: Suspicious

This February

Possibility trumps suspicion

Why the change? #1

2: Opportunity for Innovation

“When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”

Lesson: Unmanaged data quality produces trainwrecks Data quality risks: Physician errors Clerical errors “Tasty delicious baloney” (upcoding)

Another key factor: The right vocabulary for the job Data processing axiom: it’s dangerous to take data that was created for one purpose and interpret it in a different context Note how a principle from a different discipline can improve healthcare

What’s changed: “Meaningful Use” now includes patient access “A patient centered focus was a very common theme. Testifiers urged policymakers to incorporate patient access to and use of HIT in the definition of meaningful use, and as a requirement for earning incentives.” National Committee on Vital & Health Statistics Letter to David Blumenthal, National Coordinator for Health IT May 18, 2009

What’s changed: International involvement Ontario “One Patient, One Record” initiative Medicine 2.0 (Toronto) opening keynote: “Gimme My Damn Data” Europe asks to form a chapter of the Society for Participatory Medicine

“Knowledge is power.” Sir Francis Bacon English author, courtier, & philosopher (1561 - 1626) The fundamental issue:

What hasn’t changed: Usefulness of PHR data still poor My recent visits: 2 specialist visits in September ENT Septum issue Dermatologist Forehead lesion won’t go away Crusty thing on scalp Toe 4 conditions, 2 treatments received

What my PHR shows for these visits 2 specialists, 4 diagnoses, 2 treatments

It Can Be Done: Kaiser

It Can Be Done: Cleveland Clinic

What hasn’t changed: access HIPAA guarantees access, BUT… It doesn’t always happen. Year after year access complaints are in the top 3 HIPAA complaints (Source: Deven McGraw, Center for Democracy & Technology) Costs are absurd (because systems aren’t designed for portability) Same for delays

Declaration of Health Data Rights

What hasn’t changed: The need The opportunity to create new knowledge by aggregating our data To do that, we gotta get our hands on it Mash-ups: the chance to build new tools out of “software Legos” The need to correct errors

What hasn’t changed: Information Exchange Many people talk about exchanging existing data, but it’s got to be suitable data Claims data is not suitable Exchanging poor quality information is At best of little clinical value At worst, dangerous Question: Why don’t we have more clinical data?

Clay Shirky A serious internet visionary says… “Giving patients access to their medical records will just naturally improve the quality of what's in there.” “It's like the way you clean up when you know company's coming.”

Clay Shirky A serious internet visionary says… “The opposite model – clean, then share – never works out in practice.” “It provides a hidden excuse for never sharing, because if you don't get around to cleaning, you never have to share.” “By making sharing non-optional, you get around this obstacle.”

“Raw Data Now!” (Tim Berners-Lee, 2009)

“Knowledge is power.” Sir Francis Bacon English author, courtier, & philosopher (1561 - 1626) The fundamental issue:

Revisiting a Data Gaffe, Six Months On: What’s Been Learned, What’s Changed — and What Still Needs To? Dr. Danny Sands, MD, MPH e-Patient Dave deBronkart

Revisiting a Data Gaffe, Six Months On: What’s Been Learned, What’s Changed — and What Still Needs To? Dr. Danny Sands, MD, MPH e-Patient Dave deBronkart Co-Chairs Society for Participatory Medicine

Let’s get started.

Help advance our work. Join and sponsor. ParticipatoryMedicine.org and ParticipatoryMedicine.org/journal JoPM.org/launch the Journal itself e-Patients.net our blog dave@ePatientDave.com dzsands@cisco.com