Thursday, September 17, 2009

Medicine 2.0 (#Med2) Personal Health Records Where are we now?

On the fly notes from session I am attending at Medicine 2.0...

A Large cross-cultural study in US and China. Focus on Chronic Disease Management - Study by Yunan Chen of University of California - Irvine.

How does the management of medical records by patients impact outcomes.

Informed Activated Patients interacting with Prepared Proactive Teams.

In China Patients get their medical record at the end of outpatient consultations. Even if only on paper.

A long established culture of the patient maintaining a life long record.

What do people do with their records?

  • Most patients bring medical records. Many records were more than 10 years old.
  • Most patients prefer to have their record rather than leave with the hospital/doctor. It is easier when they transfer to another doctor/hospital.
  • Medical record is treated like bank account
  • Frequently reorganize records to make it easy to share with clinicians.
  • Patients rarely read medical records - but do read lab results - for chronic disease patients it is because they are familiar with details or they have low health illiteracy so can't understand what the doctor wrote.
  • Patients actively share information with doctors and clinicians
  • Records may include X-rays and charts.
  • Chronic Patients often include charts for readings taken at home. Patients do work to help Clinicians review their records.


  • PHR needs to be mobile
  • Shared responsibility with providers
  • Information needs to be integrated from providers and home care.

Scandinavian research on Diabetes Portal for Children

Modern Diabetes care has a lot of self-care. Cornerstones are:

  • Insulin
  • Nutrition
  • Exercise

Patient education is central to managing disease.

The Portal project (Diabit) was non-commercial with bottom-up collaboration.

The content:

  • Patients and Parents Community (message boards, blogs)
  • Local Provider pages

Implemented using simple, open source technology.

Median age of patients was 14 years of age.

Three main themes:

As a management tool - source of reliable information from local clinicians. Led to feeling of security and control amongst patients and parents.

As a generator - portal visits generated more info than expected. This led to increased use. Message boards were great for communication and peer-to-peer discussion. Helped parents and patients realize that they were not alone.

As a gatekeeper - Closed, secure access discouraged use. Difficulty changing passwords etc. Usability and password control discouraged use. Users don't like to use systems with logins.


- Great management tool

- keep it simple

- keep it open whenever possible.

- keep it rocking with fresh content and news

They are looking at using Facebook connect/OpenID integration to simplify the login process by allowing use of existing ids.

The Value of Multi-Tenancy Architecture in Healthcare

Dr. Louis Cornacchia

The problem - Siloed data systems , web multi-instance architecture, EMR uptake at 4%, RHIO business model is unsustainable.

NHIN not real time = not sustainable

Google, Microsoft, Dossia PHR's - uptake <6%

Complexity of medical data makes it hard to structure data.

Solution: ePatient - empowered to manage their healthcare

Physician is consultant.

Doctations: Multi-Tenancy Software As a Service.

...but is it scalable?

Multi-tenancy system is more cost-effective on a ration of 16:1.