Can “citizen scientists” help change medicine forever?

Cycling home in mid-March, like many feel­ing depressed about the pro­lif­er­at­ing coro­n­avirus pan­dem­ic, Tim Spec­tor, pro­fes­sor of genet­ic epi­demi­ol­o­gy at King’s Col­lege Lon­don, sud­den­ly had an idea.

His study of more than 14,000 twins, called Twins UK, was con­clud­ing, but what if the par­tic­i­pants were sur­veyed about their expe­ri­ence of the coro­n­avirus? With­in four days, Spec­tor and the team behind ZOE, a per­son­al nutri­tion­al tech com­pa­ny of which he is a co-founder, had expand­ed the idea and pub­licly launched the COVID Symp­tom Study app. In under 24 hours more than a mil­lion peo­ple were con­tribut­ing. The app now has more than four mil­lion con­trib­u­tors and rou­tine­ly mon­i­tors new cas­es and out­breaks.

“It’s the biggest cit­i­zen sci­ence project of its kind and has sur­passed all our expec­ta­tions, it’s been cru­cial for under­stand­ing out­breaks in the pop­u­la­tion,” says Spec­tor.

What is a citizen scientist?

Nicholas Timp­son, pro­fes­sor of genet­ic epi­demi­ol­o­gy at Bris­tol Uni­ver­si­ty, explains the cit­i­zen sci­ence con­cept as “get­ting the gen­er­al pub­lic, as opposed to patients, involved in research”.

Timp­son is part of anoth­er cit­i­zen sci­ence research project called Chil­dren of the 90s, which has been tak­ing sam­ples and sur­vey­ing indi­vid­u­als from mul­ti­ple gen­er­a­tions for more than 30 years. In response to COVID-19, Timp­son and his team are reg­u­lar­ly ques­tion­ing the par­tic­i­pants and have not­ed a dis­pro­por­tion­ate impact on younger individual’s men­tal health com­pared to last year.

Though this study and the COVID Symp­tom Study are both cit­i­zen sci­ence based, Timp­son says what is unique about the lat­ter is the medi­um or chan­nel is com­plete­ly dif­fer­ent.

“The app is very acces­si­ble; it’s a way to col­lect data across the pop­u­la­tion despite a real­ly acute and dif­fi­cult sit­u­a­tion. It’s help­ing the pub­lic inform pol­i­cy, as well as myself and oth­er researchers to link our records to the results and com­bine them. It’s a remark­able thing,” he says.

Speeding up scientific research

Con­trib­u­tors to the COVID Symp­tom Study app are asked dai­ly if they have any of 19 symp­toms. Test results can also be logged and by the end of April the app had col­lect­ed around 60,000, includ­ing 10,000 pos­i­tive, results. The datasets were shared with researchers at King’s Col­lege Lon­don who, using machine-learn­ing and arti­fi­cial intel­li­gence, looked at symp­toms that clus­tered with the pos­i­tive test results, against those clus­tered with neg­a­tive results.

The infor­ma­tion was used to train a pre­dic­tive algo­rithm that can now deter­mine, with an 80 per cent pre­dic­tive abil­i­ty, whether a per­son has COVID-19 depend­ing on their symp­toms. Researchers extrap­o­late this data across the pop­u­la­tion to cre­ate an esti­mat­ed dai­ly nation­wide and local fig­ure for peo­ple with symp­to­matic COVID-19.

Spec­tor says this data allowed the researchers to under­stand, before the gov­ern­ment, where out­breaks were occur­ring. They were also one of the first stud­ies to iden­ti­fy loss of taste and smell as a key symp­tom of the dis­ease, which was a sig­nif­i­cant break­through.

“The results are fast,” he adds. “I’ve been doing stud­ies for 30 years and nev­er got a result in less than six months. Yet, with the app, we includ­ed a ques­tion on loss of smell and taste, and we had the answer in a week. It’s an incred­i­bly fast and agile tool.”

Over­all, data from the app has informed 315 sci­en­tif­ic papers and assist­ed the government’s test­ing pro­gramme by send­ing out 10,000 tests a week to app users over two to three months.

Combining citizen science with disruptive technology

To help man­age its work­load, glob­al inde­pen­dent health net­work Cochrane, which pro­vides sys­tem­at­ic reviews and oth­er syn­the­sised research evi­dence to inform health deci­sion-mak­ing, has devel­oped a cit­i­zen sci­ence tool, called the Cochrane Crowd. Through the plat­form, vol­un­teers are asked to char­ac­terise data and research. The results are fed into an algo­rithm to clas­si­fy a record with 99 per cent accu­ra­cy.

Anna Noel-Storr, infor­ma­tion spe­cial­ist and project man­ag­er at Cochrane Crowd, says new tech­nol­o­gy com­bined with cit­i­zen sci­ence is dis­rup­tive.

“It has allowed us to scale; through this approach we can now han­dle more records than ever before and we are con­sid­er­ing how we can change some of our oth­er process­es,” she says.

How­ev­er, there are chal­lenges, such as gain­ing trust with­in the health­care pro­fes­sion and keep­ing par­tic­i­pants inter­est­ed.

The public’s eager­ness to under­stand COVID-19 has attract­ed par­tic­i­pants to the COVID Symp­tom Study and been crit­i­cal to its suc­cess. The researchers and app design­ers have encour­aged this by pro­vid­ing reg­u­lar feed­back.

“I think this is why it has been much more suc­cess­ful than the gov­ern­ment apps, which are one-way report­ing. Peo­ple like the inter­ac­tion and they get used to doing it, even those who would­n’t have before,” says Spec­tor.

The research mod­el could be used to derive insights on com­mon health prob­lems, such as obe­si­ty or dia­betes, as long as “pub­lic par­tic­i­pa­tion is high, it’s cost effec­tive and does not infringe on people’s per­son­al lib­er­ties”, he adds.

What is the future of citizen science?

How­ev­er, when con­duct­ing cit­i­zen sci­ence stud­ies, it is impor­tant to be con­scious that peo­ple who inter­act with apps, for exam­ple, are not reflec­tive of the entire pop­u­la­tion, warns Timp­son. Fur­ther­more, main­tain­ing pub­lic trust is para­mount.

“We don’t want the Cam­bridge Ana­lyt­i­ca-style wor­ry about peo­ple access­ing data in an incred­u­lous way; the notion of cit­i­zen sci­ence is far big­ger than any one study, it’s a feel­ing that as an indi­vid­ual my health and my data, if com­bined in the right way, can con­tribute to bet­ter pol­i­cy,” he says.

The COVID Symp­tom Study team are prepar­ing to launch a school pro­gramme to mon­i­tor out­breaks in the edu­ca­tion sys­tem, as well as research the long-term effects of COVID-19. ZOE, the plat­form that pow­ers the app, is look­ing to launch a per­son­al nutri­tion app next spring.

Timp­son hopes the con­tin­ued suc­cess of this research project will ulti­mate­ly see cit­i­zen sci­ence attract more peo­ple.

“I want the vis­cer­al under­stand­ing the pub­lic now have of study­ing dis­ease repli­cat­ed out­side COVID; we need to har­ness this oppor­tu­ni­ty to get peo­ple to under­stand the val­ue of their data. If we get that right, it’ll trans­form how we do pop­u­la­tion sci­ence in the future,” he con­cludes.