Israel targets 100,000 volunteers for health database project
Despite privacy concerns, voluntary program aims to promote health treatments and improve the ‘Wild West’ of accessing patients’ health info
Shoshanna Solomon was The Times of Israel's Startups and Business reporter
The Israeli government is aiming to enroll some 100,000 residents over five years in its new opt-in digital health database, to aid the nation’s bid to become a world leader in the sector, a senior government official said this week.
“It is our hope that there will be 100,000 people over time that will get into this database,” said Eli Groner, the director-general at the Prime Minister’s Office, which is spearheading the nation’s new National Digital Health plan. Groner said he believed with time people will be convinced that the collective good that will come out of the initiative outweighs privacy concerns.
Speaking at a press briefing, Groner said he hoped the database would reach its target over a period of five years from the fourth quarter of 2018, when the program will become operational. Participation in the database will be optional, he emphasized.
The Israeli government on Sunday approved a NIS 1 billion ($287 million) National Digital Health plan, which, despite mounting privacy concerns, plans to create a digital database of the medical files of some 9 million residents and make them available to local and global researchers and enterprises.
The government has vowed to protect the privacy of individuals and is touting the program as a huge boon to the medical research industry, even as critics have pointed to risks of a massive breach in patient confidentiality.
The idea behind the initiative, which Groner called “unlike anything in the world,” is twofold: to help improve health globally and to use the field as an economic growth engine by making Israel one of the world leaders in digital health solutions, he said.
Medicine today is built around the “average patient,” and caregivers have limited time and capacity to process the vast amount of information they are bombarded with daily, leading to errors. In addition, the costs of healthcare are spiraling. In the US some 17 percent of gross domestic product (GDP) is spent on healthcare, Groner said, while in Israel some 7.5% of GDP is spent on healthcare, which unlike the US, is a public expenditure.
The costs “are unsustainable,” he said, and are driving the world to personalized and preventative healthcare models to bring costs down.
And here lies Israel’s advantage. It has a small, centralized healthcare system, “a tight community in which everyone can speak to each other,” Groner said, and it has the digitalized medical records of some 98% of residents.
Creating the new database, Groner said, will allow researchers and enterprises to access data and create insights into human health treatments that will facilitate research and preventative medicine.
Groner emphasized that the program will be voluntary, and will continue to be that way going forward. “It is a purely voluntary program, period. That is my commitment. This is a volunteer research program and will remain a volunteer research program. If not enough people are willing to volunteer then the program will fail.”
Citizens will be out of the database by default unless they choose to opt into it, he clarified.
The program will also spearhead increased regulatory oversight over a field that is today a “Wild West” regarding what is permitted and forbidden while using health information, Groner said.
“This is an area that is not sufficiently regulated,” Groner said. Theoretically, he said, right now the owners of these clinical databases — the Israeli HMOs — can sell the information.
“What we are trying to do is regulate the market in an effective way that will protect privacy, that will encourage research, that will serve as a growth driver for the economy” and will increase security, he said.
Addressing the concerns that there had been no proper public debate about the initiative, he said that ministry offices had been debating all sides of the matter for over a year.
In response to a question about whether Israel would use access to the database by private companies as a way to help lower the cost of drugs for consumers, Groner said that Israel would likely use the database to help it negotiate terms with pharma companies regarding the medications that the government subsidizes.
“Are we giving the government a vehicle with which to do negotiations over this? Yes. Will we leverage it? I think we probably will. But are we going to get involved and tell private companies how to price their products, no.”
