Health Software Manifesto 1.0 (2012)

Your health records are scattered. They reside in various healthcare provider clinics, are separated by field of health, and are virtually inaccessible to you unless they are kept in a paper file at home. They are generally unavailable during times of emergency or when you need to relay your health history to a physician.

The average American past the age of retirement receives care from seven physicians within four separate organizations. Even if a clinic uses electronic health record (EHR) software it is unlikely that the data can be downloaded or transferred to another provider. Collation of health records is difficult when hundreds of companies, hospitals, and physician practices use proprietary, unconnected software. Our current systems are inoperable and incompatible with one another.

Disparate storage of health records prevents completeness of any one health record. There is no complete document anywhere, which means thorough analysis or processing of your health data is impossible. Even under CCR and HL7, the industry standards for health record formats, transferring records is nearly impossible. Diagnosis and feedback is slow and prone to error, with medical error leading to roughly 100,000 deaths in the US per year. In 2008, around 1.5 million were injured by just medication error alone, and these errors cost over $3.5 billion. The cost of all medical errors combined resulted in 6.3 million medical injuries and $19.5 billion.

Especially in the United States, the cost of healthcare is unsustainable. Politicians believe the answer lies in legislation. The older generation of EHR software developers and advocates believe the answer lies in making current systems more communicative, or formalizing a “better” health record format. The answer truly lies in the patients.

A compelling alternative to EHRs is a patient driven collation of health data, commonly known as personal health record (PHR) software. A PHR can log health data from prenatal stages until end of life. A record that is controlled and moved by the patient dodges problems caused by the multitude of fragmented EHR systems. Undoubtedly, better care will be provided to individuals whose health data is comprehensive and can be easily administered by themselves, parents, caregivers, or their network of doctors.

Consumers are already taking charge over their health data. Patients arrive at the doctor’s office prepared, having thoroughly consulted WebMD or Wikipedia for conditions they fear they have or treatments they think they need. According to Dr. Eric Topol of Scripps Research Institute, “Consumers are increasingly accessing health and medical information and progressively getting empowered.” Patients are beginning to desire better tools for keeping track of their health data.