I have been thinking a lot about how to push healthcare into a new world of patient-centered care. There are many angles and dimensions to this topic. One of which is Patient’s Rights in a World of Digital Health.
I have been observing trends that became worrisome to me :
- patient’s data use by makers of apps, chatbots for commercial purposes without patients knowing it;
- overwhelming number of niche apps, chatbots that might provide potentially misleading and dangerous information to patients due to narrow disease focus without a full understanding of overall health state of patients;
- push for patients to use specific mobile devices or gadgets in a specific language by apps developers including healthcare providers, pharma, insurance companies vs giving patients a choice…
To facilitate discussions on these and other topics related to patient-centered care in a digital world I decided to draft my initial thoughts on the subject with the hope to get more input from you all and create a more complete document.
Your comments are greatly appreciated!
Patient’s Bill of Rights in a World of Digital Health:
- Patients own their health data: EMR data; data collected by apps, gadgets;
- Patients have a right to get all their health related data in a digital form and provide access to that data to organizations, people they want;
- Patients have a right to privacy — all identifiable health related data collected on patients belong to them and special permission should be required to use that data;
- Patients have a right to refuse to use any apps or devices that providers, pharma or insurance companies force them to use for any reason;
- Patients have a right to use health related apps, chatbots to manage their health on devices of their choice and in a language of their choice;
- Patients have a right to seek medical assistance via communication channel of their choice: office visit; phone call; video call; chatbot; social networking; etc.
- Information provided by the healthcare apps, chatbots, etc have to be marked as “evidence-based” if it is, otherwise “not validated” so patients clearly understand whether the content has been validated by healthcare professionals or not.