Scroll to top
© 2019,

Patient Data Ownership and Data Property Rights Emerge as a Theme at Leading Pharma Executive Event

Multiple healthcare professionals discuss data ownership at a leading pharmaceutical event in Barcelona Spain on the heels of CMS Administrator Seema Verma’s statement on patient data ownership, and the introduction of state and federal data property rights legislation.


PRINCETON, NEW JERSEY – MAR 15th – (BUSINESS WIRE)’s data ownership capabilities that empower patients to claim healthcare data as property was a recurring topic at eyeforpharma Barcelona 2019, a leading pharma industry conference. Healthcare data ownership arose multiple times during on stage discussions as a direct path for pharma to establish a trusted and transparent relationship with communities of patients. The emerging sentiment was that ownership seems to offer an optimal framework for both the patient and the pharmaceutical industry—and the legislative timing is right.


This comes on the heels of CMS Administrator Seema Verma reinforcing patient data ownership at HIMSS 2019 just weeks ago stating, “So let me be clear. The idea that patient data belongs to providers or vendors is an epic misunderstanding. Patient data belongs to patients.” Miss Verma’s statements awoke an avalanche of tweets, social media activities and articles on patient data ownership.


“We see the benefits of a new industry standard where any data that pharma uses is permissioned data,” said Anish Shindore, data analytics and insights expert who was newly announced as an Advisor to Shindore adds “as an alternative to each pharma company building individual digital and transparency programs that are absent patient consent, a supplier like can help the industry add a substrate of consent and authorization alongside the current incumbents in the healthcare data supply chain, by leveraging the IBM Blockchain.”

To echo that point, while also on stage discussing the transformation of the healthcare industry and highlighting the mission of, Vyom Bhuta, Global Partner Commercial Life Sciences and Digital Health, Cognizant, stated “increasing transparency & building trust with patients by giving them control of their personal health data is step zero in the transformation programs that will improve healthcare for patients in areas such as precision medicine, patient engagement, prevention research, and digital health.”


“For Ferring, our focus is not to capture a mountain of underused data, but instead to focus on how we add value to the clinical practice, healthcare systems, and patient’s lives. We want data that makes an impact.” said Haider Alleg, Head of Digital, Ferring Pharmaceuticals. To make that a reality, Alleg goes on to explain that there needs to be a new track and trace mechanism for some aspects of data donation, collection, and augmentation.


The ability for pharma organizations to leverage this new engagement substrate built on a blockchain-backed combination of know your customer, consent and authorization improves compliance to regulatory frameworks globally, including HIPAA and GDPR. As multiple reports emerge around the inevitability of the re-identification of patient data with artificial intelligence and human data science, state legislators have introduced legislation in Oregon and Maryland that would enable residents of each state to claim a property right on healthcare data, giving them a choice of privacy and ownership, while preserving existing protections of HIPAA.


The claiming of a property right on human data is expanding beyond healthcare data and state legislation. Yesterday, Senator John Kennedy (R-La) introduced the federal Own Your Own Data Act empowering Americans to claim a property right on social media data. “This legislation allows users to access the personal data that social media companies have compiled, and it transfers data property rights back into the hands of the users. These social media companies should not own the data that you create. This legislation will give control and ownership back to the users,” Senator Kennedy said in a press release which announced the new legislation.


The Consent and Authorization Substrate customized for the pharmaceutical industry was first demonstrated live on stage at CNS Summit in November 2018. According to Richie Etwaru, CEO of the demonstration has since triggered the beginning of pilots in leading pharma organizations who seek to be “more patient first” with individuals who have opted in for a better version of privacy than they have today. Matt Sinderbrand, CEO of Betterpath, one of the dozens of organizations championing data ownership in the Coalition for Data Rights and Privacy asserts that “data ownership is a modern-day civil right, there is very little that is civil about the current state of digital privacy.”

Glenn Zimmerman
Chief Communications Officer
[email protected]

We are

Watch and share video. Join the movement via #My31

We are