Genetic Alliance will devise and review the effectiveness of health data sharing platform.
The Robert Wood Johnson Foundation (RWJF) contributed to the expansion of health data sharing services by awarding Genetic Alliance, a nonprofit health advocacy organization, a $500,000 grant. Genetic Alliance will use the funding to devise and review the effectiveness of a “white label” version of Platform for Engaging Everyone Responsibly (PEER), a system that lets patients and physicians share health information with researchers and each other.
“We have found that the whole process would really benefit from production of a ‘white label’ version to permit disease and community organizations to build registries with dynamic consent quickly and efficiently,” Sharon Terry, president and CEO of Genetic Alliance, said in a statement. “I am especially excited that this is an opportunity for organizations and communities to work together for the greater good, and not just for their own need.”
Genetic Alliance has been working to build a capable, collaborative system to help speed up research on genetic conditions. The company works to ensure that each individual’s concerns in regard to the privacy of their secure information are shown in how their information can be used and who is allowed to access it.
“This grant will enable us to make these essential aspects simpler and more cost effective for anyone interested in creating a registry, conducting a survey, or wishing to embark on other forms of participant-centric research. This project will essentially create a ‘kit’, simplifying registry creation,” Terry said.
The funding from RWJF will also allow Genetic Alliance to evaluate the PEER program. Genetic Alliance will study participants’ experiences with the program as the individuals use it to make decisions on data sharing, privacy, and access. Genetic Alliance will work with about 30 participating organizations to complete this research.
“Giving people the mechanisms to share their health data in ways that are meaningful and comfortable to them is critical to developing a new relationship between people and researchers and clinicians, a relationship better able to develop new knowledge and insights that can improve health,” said Paul Tarini, senior program officer at the Robert Wood Johnson Foundation. “The deeper engagement has tremendous potential to bring us closer to a culture of Health where all people can live healthier lives.”
According to a previously published article on HealthITSecurity.com, health data sharing can lead to improved data security as well as help accelerate research. An increase in use of data sharing platforms can increase a healthcare facility’s awareness of their own PHI security methods, as well as other facilities’ cybersecurity measures.
The increased cybersecurity awareness should come as a relief to physicians trying to meet their patients’ desire to add health data sharing to their care. An article on HealthITAnalytics.com, stated that studies show 70 percent of patients, though concerned about cybersecurity issues, were willing to put aside their security fears if electronic data sharing would improve their treatment and give vital information to providers.
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