NEW YORK — Mayor Bill de Blasio, faced in May with the task of monitoring the spread of coronavirus among a population of more than 8 million people, wanted community buy-in for his city’s mammoth contact tracing program to work. So he created an advisory board and stacked it with community leaders and public health experts.
Two months later, members say the city has ignored the committee’s recommendations on an issue central to the program’s success: protecting privacy.
The group pushed the city to ditch Salesforce, a third-party software program, and create an internal database to shore up privacy concerns that have hampered the effort. That push along with other recommendations have fallen on deaf ears, according to 10 advisory board members who spoke to POLITICO.
“They’re not particularly interested in our input,” said one board member who spoke on condition of anonymity to discuss closed-door proceedings. “They want to have the community advisory board. They don’t actually want the board to advise.”
The de Blasio administration created the board shortly after announcing the program in an effort to win over communities historically skeptical of government. The program aims to find everyone who tested positive for Covid-19 and find out where they’ve been and whom they’ve been in contact with, and then reach out to those people who may have been exposed. The goal is to stop the chain of transmission — a crucial step in reopening the city’s cratering economy and hopefully preventing hospitals from being overrun again.
The ignored recommendations are just the latest controversy for the program, which has been beset by political squabbling since the mayor decided to put New York’s public hospital system in charge of the effort — bypassing his own health department, which is traditionally charged with tracking viral outbreaks. The officials running the program have struggled to secure a high-enough level of cooperation from the public, with many who’ve contracted Covid-19 refusing to answer questions about others they’ve come in contact with. If the success rate doesn’t improve, the city could face another disastrous second wave this fall.
The advisory board members, most of whom spoke on condition of anonymity, said they have pushed to address a lack of transparency from government, poor data collection practices, and privacy issues, among other considerations, since they started meeting on May 13, but the city has declined to make most adjustments.
“We are totally a fig leaf, and there have been a number of instances where we have very strongly spoken out about issues and have been completely ignored,” said Housing Works CEO Charles King.
The members pushed for stronger language on educational materials for the city’s testing and tracing program, to “really assure people that their information wouldn’t be shared with the federal government” or include questions of immigration status, said one board member. The board expressed concerns when Health + Hospitals, the public hospital system, noted that people’s information will not be shared with the federal government, including ICE — unless required by law.
“If you cannot establish that trust, the system will collapse,” the board member said.
Jackie Bray, deputy executive director of the test and trace program, said the city takes confidentiality seriously, but can’t run afoul of the law if it comes down to that.
“The city keeps all of this data completely confidential. Full stop,” she said, citing legal protections and health codes on the books. “Anyone can spin any hypothetical they want, but we have a real track record, and we’re using all the experience that we bring to this to fight this virus.”
She dismissed the idea that the city health department, not Health + Hospitals, is the agency with the track record, pointing to the municipal hospital system’s ability to protect patient data and its partnership with the health department.
“Making this deep distinction between the health department and H+H is ignorant to how it’s being run and how it’s being executed,” she said.
The city would fight a subpoena for specific case data, Bray said, yet privacy experts and advocates warned that going to court is a risky proposition.
Data within a city-built database would be better insulated from subpoenas under health information policy laws, said James Hodge, director of the Center for Public Health Law and Policy at Arizona State University.
“Data held in social media or other sites like Salesforce may not enjoy the same legal protections from subpoenas, despite similar privacy interests of data subjects,” he said.
Salesforce declined to comment. The city would not say how much it is paying the company and the contract is not on record with the city comptroller’s office.
The administration defended its use of Salesforce, saying in-house public health databases do not have the capability to manage daily monitoring and supportive services “at this scale.”
Board members argue now is the time to make that shift as Covid-19 cases are at early-March levels, or about fewer than 300 new cases per day, according to the most recent data from the city health department.
“I don’t believe it makes sense to spend money with private institutions when we can bring it in house,” one member said. “We can’t put [Covid-19 positive people] back in the same system that’s inequitable. I would prefer a process of getting it in-house.”
Another advisory board member said, as it stands now, she would not encourage people in her community to share information with a city-employed contact tracer.
“I would honestly tell them don’t tell them anything,” she said. “Tell them locations, but not people.”
The lack of privacy protections is why board members pushed Health + Hospitals to build its own internal network and state a position on NY S 8450b/A10500a, a bill introduced by state Sen. Gustavo Rivera and Assemblymember Richard Gottfried to bar Covid-19 contact tracing data from being used for any other purpose.
The mayor’s office said it has been working with legislators on the bill, and it’s told the advisory board it supports the bill’s intent, despite “specific drafting issues that we are working to resolve.”
Gottfried said the city reached out on Wednesday with its concerns, two days after the health committee held its last meeting.
“We are hoping to address those concerns as best as possible given the extremely short time frame for further amendment at this point,” he told POLITICO.
The de Blasio administration asked to hold onto the data for a longer period of time than the bill currently allows over concerns that deleting data prematurely could “inadvertently hamper our response,” Bray said.
“There are a lot of questions about the epidemiology of this virus that make it important for us to take a look for the details of that bill,” she said.
The advisory board’s concerns are compounded by the internal feud caused by de Blasio when he ceded the health department’s control of contact tracing to the city’s public hospital system, “muddying public health law,” two members said.
Board members said there were several staffers who worked for the health department but were essentially poached by Health + Hospitals, making lines of authority unclear.
“It’s a losing battle,” said one board member. “Taking control away from [the health department] and having this entity called Test and Trace and having H+H in charge caused real confusion about who is supposed to answer questions.”
The board members also butted heads with city leaders over how data was collected and promoted. Some argued the city was trying to make the program appear more successful than it was. The city has opted to use a “waterfall chart” to show where people fall out of the process, such as not picking up the phone, finishing the interview or providing secondary contact information.
“It is best to be as transparent as possible in sharing the data but in fair analysis of the data,” Wafaa El-Sadr, an advisory board member and professor of epidemiology and medicine at Columbia University, said during one meeting. “Contact tracing is not easy. Giving the impression that everything is perfect is not useful and leads to loss of credibility for our city.”
City Hall has pushed back on criticism that the program is unsuccessful and disputed the notion their math is skewed, saying the program has reached more than 85 percent of the 12,384 cases it identified from June 1 to July 4.
Of those cases, the city reached 10,579 people but only 6,752 of them completed the interview — yielding a successful interview for a little more than half the cases identified. The city’s numbers have markedly improved since the effort began. But a quarter of the people who completed the interview still did not provide a secondary contact, a crucial goal of any contact tracing program.
“All of our data is posted and readily available on our website,” de Blasio spokesperson Avery Cohen said. “I would challenge you to find a locality that is regularly reporting their tracing data with this degree of transparency.”
The city is also struggling to collect data, board members said.
The test and trace program has a Covid-19 dashboard with data on the number of both New Yorkers and Health + Hospitals patients tested for the novel coronavirus, along with racial, geographical and gender breakdowns of H+H patients. Races are grouped as white, Black, Hispanic and other — buckets that leave out large swaths of New Yorkers like Asian and Arab communities, among others, according to a screenshot of the program’s Covid-19 dashboard reviewed by POLITICO.
City Hall said it “does not control whether or not individual providers and doctors, hospitals collect testing and race data,” and pointed to state data from April on granular racial data, but could not explain why Health + Hospitals could not provide a better racial breakdown for its Covid-19 patients.
“Without accurate data, we are in the dark,” one board member said.
That could deprive resources from areas that are hardest hit.
“If you get granular and start exposing those issues, you need to put resources there,” she said, adding this year’s budget may undercut the Covid-19 efforts. “It has been frustrating. It has been a frustrating experience for many.”