The health technology landscape is constantly evolving.
We are working to ensure that this evolution bends toward greater privacy controls.
Transparency - Eliminate Hidden Data Brokers
Data is collected about each of us (and our kids) by thousands of data brokers. Patient Privacy Rights is working to develop standards for convenient notice and transparency as to how this personal data is accessed and used.
The huge dossiers of personal information collected by these brokers can be used to manipulate prices, provide unwelcome surveillance, and generally increase the cost of healthcare for everyone, and personal data can even impact educational and employment opportunities.
De-identification is used to sell data to hidden data brokers without our consent. It does not mitigate the costs to society of the hidden data uses and cannot eliminate the risk to the individual person as well. As research at the Harvard University Data Privacy Lab has shown, it is simply too easy to re-identify information.
The cost of technology is now negligible compared to the value of detailed personal profiles. Technology can and must be used to provide transparency to consumers and patients.
Data brokers must be required to provide us with a means to review, correct, and delete our personal dossiers, and especially those of our children.
Technology that Facilitates a Direct Physician-Patient Relationship
Today’s Electronic Health Records systems (EHRs) have become the effective censors and gatekeepers of the physician-patient interaction.
EHR features reflect the business of medicine rather than the personal dignity of the patient and professional responsibility of the physician to put the interests of their patients ahead of all others.
The ability to have a confidential relationship with a physician, for a physician to choose the technology they want to support their patients, and for patients to organize care around the real-world care team they choose has been lost.
This situation is about to get much worse as powerful artificial intelligence software comes online. Will access to machine intelligence, decision support, and even second opinions be subject to the censorship of the physician’s employer and their EHR vendor?
Patient Privacy Rights is leading the effort to create true longitudinal health records centered on the patient rather than a particular institution. These records will allow both physicians and patients to choose the technologies and services they prefer.
Standardized and Structured Privacy Policies
Patient Privacy Rights is working to categorize and structure the content of privacy policies, turning multi-page documents into a handful of bullet points.
Have you ever tried to read a privacy policy? Most of us probably click "I Agree" and move on with our lives.
It is nearly impossible to compare privacy policies of two service providers. And it is not easy to keep up with changes in the privacy policy of a service provider as they change business practices or merge.
The range of practices related to the use and sharing of personal data is actually quite limited. Yet each health service provider creates a different and highly original privacy policy that becomes inscrutable to a regular person.
Standardized, shortened privacy policies would easily highlight the difference between competitive service offerings, and help us make informed choices about the risks of sharing personal information with a particular service provider.