EXPERT ANALYSIS FROM IMED 2014
VIENNA (FRONTLINE MEDICAL NEWS) – Participatory surveillance has begun to enter mainstream public health.
The Brazilian Ministry of Health arranged for distribution of a participatory surveillance app for monitoring 10 symptoms in people attending or working at 2014 FIFA World Cup events. The smart phone app had 9,434 downloads, 7,155 registered users, and 4,706 active users who sent a message about their symptom status at least three times during the World Cup last June and July in Brazil, Dr. Marlo Libel said at the International Meeting on Emerging Diseases and Surveillance. “Healthy Cup 2014” became the first participatory surveillance tool ever used at a mass gathering event, he said.
“We demonstrated that direct self-reporting during a short period of time could be an excellent tool to complement other surveillance activities,” said Dr. Libel, a medical epidemiology consultant who worked with the Skoll Global Threats Fund on the Brazilian project. Officials at the Brazilian Ministry of Health were so pleased with the program that they are planning with Skoll to release similar apps for Carnival in Feb. 2015 and then for the 2016 Summer Olympics, Dr. Libel said.
Flu Near You shows U.S. growth
Longer-term participatory surveillance of U.S. residents began with the launch of the Flu Near You program in 2012, and by October 2014 it had roughly 100,000 U.S. participants, said John S. Brownstein, Ph.D. , an epidemiologist at Harvard Medical School in Boston and cofounder of Flu Near You.
That level is large enough to provide meaningful information, according to Matthew Biggerstaff, an epidemiologist at the Centers for Disease Control and Prevention in Atlanta, as well as other public health officials.
“We’ve been really excited at CDC about Flu Near You because it gives us a view of influenza illness that goes beyond the medically attended cases we base our usual surveillance on,” said Matthew Biggerstaff, an epidemiologist in the CDC’s influenza division. “It adds timeliness because we usually have a 1-week lag” in reporting data from outpatient physician visits and hospitalizations. Flu Near You, which asks participants to report weekly on whether they have any of 10 symptoms gives information that goes beyond the flu-like illness tallied by standard CDC surveillance. “We do not think that it will replace our traditional health care–based surveillance, but it gives us another set of data to look at,” Mr. Biggerstaff said in an interview.
The 10 symptoms that Flu Near You prompts users to report on each week are fever, cough, sore throat, shortness of breath, chills or night sweats, fatigue, nausea and vomiting, diarrhea, body ache, and headache. New participants are also asked whether they received a flu shot during the prior season, Aug. 1-July 31, as well as during the current season since the most recent July 31.
Flu Near You and other participatory surveillance tools also offer epidemiologists a way to track the participating cohort over time. That allows assessment of individual attack rates of influenza-like illness and other syndromes and also vaccine efficacy, Mr. Biggerstaff noted.
“It helps give us a feel for what is happening” with influenza. “We have worked with Flu Near You in the past and we continue to think about ways to work together on digital disease surveillance. We promote it to our state and local colleagues. We think it is a good resource for states to have,” he sad. The CDC’s influenza division is also assessing and using other novel forms of surveillance data, such as influenza and flu mentions on Twitter and searches on Google as well as a statistic Google maintains as Flu Trends .
Participatory surveillance is “very exciting” but is also “new and unproven and remains an experiment,” said Dr. Lawrence C. Madoff, director of the division of epidemiology and immunization at the Massachusetts Department of Public Health in Boston. But while participatory surveillance must still prove its role, U.S. public health officials “increasingly” accept the value of data from tools like Flu Near You, Dr. Madoff said in an interview. He cited the endorsement that participatory surveillance received in recent surveillance and early-detection recommendations from the World Health Organization. The 100,000 participants in Flu Near You give it a “critical mass that will become even more robust as it continues to grow,” Dr. Madoff said.
Further growth is clearly a priority for Flu Near You. “We’re now very excited to promote Flu Near You in a big way to try to get more numbers there and see if we can have a faster system for picking up influenza,” said Dr. Mark S. Smolinski, director of global health at Skoll.
“We are still trying to think through how do we get [Flu Near You] into the general consciousness” of more Americans, said Dr. Brownstein. While participants, not all of whom are active every week, provide enough data to show good correlation with the CDC’s routine surveillance on a national scale, if Flu Near You “had enough numbers we could drill down into subpopulations,” he noted. For now, the volume of participation makes subgroups too scanty in size for meaningful analysis, Dr. Brownstein conceded.
Mass gathering surveillance in Brazil
The Brazilian surveillance program at the World Cup was modeled on Flu Near You, but Dr. Libel, Dr. Smolinski, and their collaborators produced the app in about 8 weeks after receiving very short notice of the Brazilians’ interest. The weekly, symptom surveillance questions posed by the app replicated seven symptoms from Flu Near You – fever, cough, sore throat, shortness of breath, nausea and vomiting, diarrhea, and headache – and added three new symptoms to the survey: joint pain, bleeding, and red spots on body. This allowed the Health Ministry to also monitor for outbreaks of other infections including measles, cholera, dengue, and chikungunya, Dr. Libel said. The Brazilian app also asked participants each week whether they had been in contact with anyone who had any of the 10 listed symptoms, and whether they had looked for health care services. No outbreaks of any type occurred in Brazil during the World Cup, but during the period it was actively used 27% of the frequent respondents reported experiencing at least one symptom.
The first Brazilian effort “was basically a pilot program,” with little advance promotion, Dr. Smolinksi said in an interview. Officials of the Brazilian Ministry of Health were “impressed” with the data collected. They also liked the ability of the system to push out information on health care access to registered users, and the potential the app offered to send out urgent public health messages. “What the Health Ministry loved the most was that if there had been an outbreak they could have immediately reached out to fans,” Dr. Smolinski said.
The Ministry has interest in expanded surveillance and outreach programs for Carnival and the 2016 Summer Olympics, and Dr. Smolinski and his associates are hopeful that the International Olympics Committee will be receptive to the program and aid in its promotion during 2016. They are also planning to expand beyond smart phones and include the capability to interact with users via text and voice messages.
“We hope we will have huge numbers at the Olympics,” to better document the role participatory surveillance can play at mass gatherings, Dr. Smolinski said.
Dr. Libel, Dr. Brownstein, Mr. Biggerstaff, Dr. Smolinski, and Dr. Madoff had no disclosures.
On Twitter @mitchelzoler
