To share or not to share: Inquiries on personal health data-sharing

February 19, 2019
In ,

Patient Profile

In the prevalence of global data breaches, is trust still the key for personal data sharing, especially if it involves an individual’s most private information?

Advancements in technology have made incredible innovations in finding ways to the treatment of diseases. With the emergence of technology disruptors, the healthcare and life science industries are greatly benefiting from the transformations those brought on better comprehension of the human pathology. Data, especially data from the patient profile, has become more significant in decision-making determining the appropriate treatment and practices suitable for each patient.

Artificial intelligence enables personalized medicine. The success of personalized medicine depends on the ability to share and retrieve patient data which AI use to synthesize in order to drive with results. This means that health data linkage is required to a more personalized approach to medicine. But is it really necessary for the patients to provide detailed information including their genetic information to get treated? As data is the common theme that drives health technologies, data sharing is a precondition of personalized medicine.

It is reported that in oncology, data-sharing is on the rise making the information shared across an array of researchers, clinicians and other professionals involved in developing personalized treatment protocols and therapies. Since cancer is complex, data-sharing is important. In order to reap the benefits of precision medicine, an oncologist must find similar patients clinically and molecularly to the patient they are treating for them to understand the treatments and outcomes for those similar patients. Not because there are similar symptoms it also means that people have the same disease that is why researchers are finding genetic differences in people and their tumors. Although a personalized approach is a better way to shrink tumors it should also be understood that it is not always the cure.

Patient-level data holds a promise of creating a novel as well as improved understanding of cancer trends, identify early signs, and prevent diseases. The challenge here lies in giving physicians access to patient data in the interest of saving lives while also protecting the patients’ identities.

In a YouGov poll by ODI research, nearly half of those surveyed said they would be happy to share their medical data if it helped develop new medicines or treatments. People are more comfortable sharing personal data if they have been told how it will be used, according to the Open Data Institute.

Despite the guidance on data-sharing, data are not being shared to a degree that can trigger the expected data-driven revolution in precision medicine. This is because ethical guidelines stress the importance of respecting people. Sure, shared data can produce new knowledge but considering the consent of an individual with their personal information is equally important. The reason why people have negative views on data-sharing is that of the risks concerning privacy and misuse of data.

Just like in any other type of relationship, trust is the bedrock which makes data-sharing possible. With the good promise of personalized medicine, the public’s concern must not put into vain. Security is significant in protecting the privacy of sensitive health data necessary for personalized medicine research.

Beyond whether to share or not to share data are the more pressing questions which need to be regarded as well: What would motivate people to share their personal health data? What could be the factors that would encourage people to join data-sharing communities?

Will the public have a 100% control on which of their personal data they are willing to share? How does privacy concerns affect advances that could happen? How should these privacy concerns be addressed? How could public trust be enhanced? Will the public have an option of reconsidering data-sharing on a regular basis?

Learn and share expertise with other Oncology leaders from various leading and new companies in Proventa International’s Oncology Strategy Meeting happening on the 13th of March 2019 at The Westin Grand Munich.

See the event agenda here.

Carrie Carbo
Research Analyst, Proventa International