Patients want more control over health data sharing, WADA survey finds

Patients want the ability to opt in or out of having their medical data shared with third parties, according to a new survey from the American Medical Association. (Aviation)

After the fall of Roe c. Wade, the majority of patients have become increasingly concerned about the privacy of their health data and how providers handle their personal information. A new American medical association confirms that patients want providers to give them the option to opt out or share data.

The data was compiled from a survey of 1,000 patients, which found that nearly 80% of patients want the option to opt out of sharing some or all of their health data with third parties. Another 75% want the option to opt in to data sharing before a company uses their health data.

And more than 75% of patients would prefer to receive a request from a company to use their health data for a new purpose, before the event.

The investigation confirms several warnings from Congress to tech giants and health app developers about sharing health information data and location tracking in the wake of the Dobbs ruling. While Congress has launched several investigations and proposed new bills to target these risks, such as banning the sale of health information to data brokers, these measures will take time.

For healthcare providers, the survey and concerns should signal the need for greater transparency in data-sharing practices, as well as patient education about how healthcare apps currently handle data. consumer health data – and the persistent issues that put patient privacy at stake.

Several reports in recent years and several regulatory actions highlight the privacy risks of health apps and the common practice for most health apps to regularly share consumer health data with third parties, such as data brokers. , with no transparency in practice.

While most patients believe that providers are committed to protecting patient privacy, AMA President Jack Resneck Jr., MD, explained that many digital health technologies “lack even basis of confidentiality” to have honest discussions about health.

“Most health apps are either unregulated or under-regulated,” Resneck said in a statement. “Patient trust in data privacy is undermined as technology companies and data brokers access indelible health data without the patient’s knowledge or consent and share this information with third parties, including law enforcement agencies. of the order.”

In fact, providers and hospitals are the most trusted personal health data. On the other hand, the survey revealed that social media sites, employers and technology companies were the least trusted.

Health and data privacy considered a right

The overwhelming majority of patients (92%) believe that data privacy is a right and that health data should not be available for purchase. Another 75% of patients are concerned about privacy. Only 20% of patients said they know the scope of companies and individuals who have access to their data.

In response, the vast majority of patients believe that Congress, regulators, and relevant entities should be held accountable and required to be transparent about how health data is used. Most patients want companies to be held legally accountable for their use of health data and want health app developers to be transparent about data sharing practices.

Additionally, 88% of patients want their providers and hospitals to be able to review apps for privacy and security measures, especially before health apps gain access to consumer health data. As it stands, federal regulations prohibit vendors and electronic health record (EHR) systems from performing privacy and security reviews.

The AMA reiterated its support for patients to have meaningful control over their data and a clear understanding of how their health data is being used, again calling for a national privacy framework to tackle these systemic issues and advocating for near-term application transparency requirements.

More short-term and long-term policy initiatives, as well as strong enforcement of federal and state laws, are needed to address these concerns and risks.

Resneck added, “Policymakers and developers must do more to protect patient health information. »


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