Why data privacy is crucial to the future of healthcare

Since the onset of Covid-19, we’ve become far more accus­tomed to con­sum­ing health data. Whether it’s using telemed­i­cine plat­forms or sign­ing up to NHS Track and Trace, health data col­lec­tion has become a very real and vis­i­ble part of our lives. 

Accord­ing to the gov­ern­ment, health data col­lec­tion and dis­tri­b­u­tion shaped our response to “the great­est pub­lic health emer­gency that this coun­try has tack­led for gen­er­a­tions” and “made all the dif­fer­ence”. But this begs the ques­tion – where does data pri­va­cy fit into the future of health­care? 

In its draft pol­i­cy paper, Data saves lives: reshap­ing health and social care with data, pub­lished in Sep­tem­ber 2021, the UK gov­ern­ment said the shar­ing of health data dur­ing the pan­dem­ic helped to inform the response over who would be most vul­ner­a­ble to the effects of the virus and who should shield. Data sup­port­ed vac­cine devel­op­ment efforts and tri­als, while health records were used to dic­tate who had the ear­li­est access to vac­cines when they were made avail­able. 

Health data vs Covid-19

Such efforts are “using data as intel­li­gence to help us to define pol­i­cy”, accord­ing to Pro­fes­sor Mark Lawler, sci­en­tif­ic direc­tor at the DATA-CAN health data research hub and pro­fes­sor of dig­i­tal health at Queen’s Uni­ver­si­ty Belfast. 

At the begin­ning of the pan­dem­ic, there was no data on the impacts of the pan­dem­ic or the lock­down and the indi­rect impacts they were hav­ing on can­cer pre­sen­ta­tion­al delay, diag­nos­tic delay and treat­ment delay, he says. 

We all talked about our dif­fer­ent vac­cines like they were wine vari­eties

“That’s where we start­ed,” he con­tin­ues. “Ini­tial data showed us that sev­en out of 10 peo­ple who had a sus­pi­cion of can­cer either weren’t going to or weren’t being seen by spe­cial­ist can­cer ser­vices. We pre­sent­ed our data to WHO Europe and the Euro­pean Can­cer Organ­i­sa­tion and from that point, it became a Euro­pean effort.” 

The mass shar­ing of pub­lic health and patient data isn’t unique to the last two years. In 2002 the UK Health Ser­vice (Con­trol of Patient Infor­ma­tion) Reg­u­la­tions were intro­duced, which give the cur­rent health sec­re­tary the right to access health data in times of health emer­gen­cies. This can be used in “the sur­veil­lance and analy­sis of health and dis­ease, the mon­i­tor­ing and audit of health and health-relat­ed care pro­vi­sion and out­comes where such pro­vi­sion has been made, [and] the plan­ning and admin­is­tra­tion of the pro­vi­sion made for health and health-relat­ed care.” 

This means the gov­ern­ment can gain health­care data on every­thing from cer­vi­cal can­cer screen­ings to vac­ci­na­tion roll­outs. In response to Covid-19, then health sec­re­tary Matt Han­cock ini­ti­at­ed the right to access and share data in April 2020. 

The rise of telemedicine 

While health data is a key com­po­nent in the government’s response to the pan­dem­ic, many tele­health and online health ser­vices have also report­ed a rapid uptake. Accord­ing to a recent analy­sis by McK­in­sey and Com­pa­ny, tele­health use has increased by 38 times com­pared to before Covid-19. 

Online doc­tors have been praised for increas­ing access to health­care dur­ing Covid-19 with­out putting patients at risk of catch­ing the virus in a med­ical set­ting. How­ev­er, with increased use of tele­health ser­vices comes increased health data shar­ing.

At the height of the pan­dem­ic, online doc­tor and dig­i­tal health­care com­pa­ny Baby­lon “expe­ri­enced a boom in app usage in the UK and saw a need for expand­ed ser­vices”, said a spokesper­son. Its team of engi­neers built its Covid-19 Care Assis­tant in just 10 days, the spokesper­son said, offer­ing 8% of the pop­u­la­tion AI-led tech­nol­o­gy that helped triage patients and min­imise the bur­den on clin­i­cians, hos­pi­tals and A&E.

“The increased demand for vir­tu­al care also led to Baby­lon becom­ing the UK’s largest and fastest NHS GP prac­tice, with over 100,000 reg­is­tered patients,” the spokesper­son con­tin­ued. “Baby­lon also launched in the US in 2020 and is quick­ly expand­ing to cov­er 3.5 mil­lion patients.” 

You need to look at how you bal­ance main­tain­ing the pri­va­cy of the indi­vid­ual with using the data for good

As usage has increased, people’s gen­er­al per­cep­tions of tele­health ser­vices have improved. Alice Pel­ton is founder of The Low­down, a review plat­form for con­tra­cep­tion.  She notes that the move to online ser­vices was already occur­ring. 

“Being able to book [an appoint­ment] for a time that suits you, being able to get evening or week­end appoint­ments that work around peo­ple’s work or child­care” and being able to speak to your doc­tor from the com­fort of your home were all fac­tors in people’s move to online, she says. 

A spokesper­son for SH:24, the dig­i­tal sex­u­al health ser­vice, has the same opin­ion. “The frus­tra­tion felt by those try­ing to access basic sex­u­al health ser­vices is pal­pa­ble in most

clin­ics. Pre-Covid clin­ic wait­ing rooms were packed and tense,” the spokesper­son said. “By expand­ing oppor­tu­ni­ties for access­ing ser­vices, we believe we have improved ser­vice

user expe­ri­ence, helped trans­form the health­care sys­tem and reduced the phys­i­cal and

psy­cho­log­i­cal impact of an unin­tend­ed preg­nan­cy and/or sex­u­al­ly trans­mit­ted infec­tion.”

The increased access to per­son­alised and acces­si­ble care, achieved in part by the grow­ing col­lec­tion and shar­ing of health data, sounds ide­al. But as health data cul­ti­va­tion has devel­oped, breach­es have become an unfor­tu­nate norm: few data sets are more sen­si­tive than our health data.

Data breaches 

Accord­ing to a study pub­lished by data secu­ri­ty provider Bit­glass in Feb­ru­ary 2021, hos­pi­tal data breach­es increased across the US in 2020, affect­ing around 26.4 mil­lion peo­ple. Health­care data breach­es have dou­bled since 2014. As recent­ly as July 2021 fears were expressed over thou­sands of NHS patients’ pri­vate data being shared with strangers as details were mis­tak­en­ly mixed up and sent out to the wrong patients. 

Under­stand­ably, this may make you scep­ti­cal about the future of mass shar­ing of health data and your pri­va­cy. 

“You need to look at how you bal­ance main­tain­ing the pri­va­cy of the indi­vid­ual with using the data for good. It’s para­mount that we pro­tect the pri­va­cy of the indi­vid­ual while also being effec­tive,” says Lawler. 

The NHS pro­tects patient data through a series of cyber­se­cu­ri­ty pro­vi­sions, accord­ing to the ser­vice. It mon­i­tors for threats and vul­ner­a­bil­i­ties 24 hours a day and has vir­tu­al perime­ter secu­ri­ty. How­ev­er, news of breach­es can under­mine pub­lic con­fi­dence in the col­lec­tion and shar­ing of health data. 

Shar­ing of health data also has a mas­sive impact on pub­lic health

“We see the same hic­cups over and over again. There’s a par­tic­u­lar focus on com­mer­cial access to health data. There needs to be trans­paren­cy about what’s hap­pen­ing,” says Sar­i­on Bow­ers, head of pol­i­cy at the Well­come Sanger Insti­tute, which focus­es on genom­ic sci­ence. “A lot of peo­ple when they hear health data they think of their health records. It can also be a genom­ic sequence. And when you cre­ate on a large scale you get more depth. You can iden­ti­fy vari­a­tions in patients and adverse drug reac­tions, which cost the NHS a huge amount of mon­ey every year and real­ly impact patients’ lives.” 

She con­tin­ues: “Hav­ing the data to spot that is trans­for­ma­tion­al. Shar­ing of health data also has a mas­sive impact on pub­lic health. We’ve been able to rapid­ly iden­ti­fy vari­ants and tar­get pub­lic health. As we’ve done that for Covid-19 we can use it for oth­er dis­eases.”

The future of healthcare

It seems that trans­paren­cy in the way health data is col­lect­ed, stored, reg­u­lat­ed and used is the key to gain­ing pub­lic trust in part­ing with their infor­ma­tion. With devel­op­ments in treat­ments and patients’ qual­i­ty of life list­ed as some of the top ben­e­fits of cul­ti­vat­ing health data, it’s tempt­ing to over­look the ever-increas­ing pri­va­cy issues and breach­es. 

Con­duct­ing work in trust­ed research envi­ron­ments may be one way of gain­ing pub­lic trust, says Lawler. 

“Rather than data mov­ing around and run­ning the risk of poten­tial pri­va­cy breach­es, you keep the data in a very safe envi­ron­ment and then you have safe researchers who are trained to deal with pri­va­cy issues,” he explains. “We some­times call it the five safes; safe peo­ple work­ing in safe envi­ron­ments with safe tech­nol­o­gy look­ing at devel­op­ing safe out­puts that are rel­e­vant to patients” lead­ing to safe data.

Both Lawler and Bow­ers empha­sise the impor­tance and ben­e­fits of includ­ing patients in data cul­ti­va­tion and shar­ing through advi­so­ry boards. Par­tic­i­pants can bring views on why some­thing shouldn’t be done for rea­sons the pro­fes­sion­als might not think about, notes Bow­ers. 

“And if any­thing goes slight­ly wrong, hav­ing par­tic­i­pants there to speak up can be a real­ly valu­able asset,” she con­tin­ues. “That’s not to say you should put them on the line, but I think hav­ing them to speak up for them­selves can be real­ly valu­able.” 

Covid-19 has high­light­ed the glob­al response that can be achieved if research bod­ies and coun­tries share health data. But should indi­vid­u­als put their health infor­ma­tion at risk of breach­es and inva­sions of pri­va­cy in the name of dis­ease diag­no­sis and treat­ment? 

At times, thou­sands of peo­ple have died and bil­lions of pounds wast­ed when health data hasn’t been used or exploit­ed to its full poten­tial, accord­ing to a study pub­lished on Sci­ence Direct.  How­ev­er, the report con­clud­ed that “a wider under­stand­ing of its nature is required before it can be cap­tured and suc­cess­ful­ly tamed.”

If the increased shar­ing of health data is to become a key fac­tor in improv­ing health­care and the lives of patients around the globe, pri­va­cy secu­ri­ty will need to devel­op just as quick­ly. This doesn’t just mean com­ply­ing with reg­u­la­tions set out by the Gen­er­al Data Pro­tec­tion Reg­u­la­tion (GDPR) or the US Health Insur­ance Porta­bil­i­ty and Account­abil­i­ty Act (HIPAA). It also means encrypt­ing data and restrict­ing access to it, as well as edu­cat­ing the staff that work with­in the health­care sys­tem and han­dle sen­si­tive data. 

Sim­i­lar­ly, after so much expo­sure to health data in our every­day lives, Bow­ers pre­dicts an increase in the wide­spread knowl­edge of how health data is used and the pri­va­cy con­cerns sur­round­ing it.

“We all talked about our dif­fer­ent vac­cines like they were wine vari­eties. I didn’t know any­thing about lat­er­al flow tests before,” she says. “So knowl­edge does seep through. I think the pub­lic will be more knowl­edge­able about health data and I think that needs to be encour­aged.” 

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