“My doctor is amazing and helps us a lot. I have the basic language to express my needs and my son’s needs to him, and he takes the time to understand me,” explains Feysa Abdi, a 50-year-old full-time carer for her autistic son.
And while Ms Abdi — who loves her east London GP — is not clear what the practice does with her and her son’s personal health records, she “expects them to keep it private.”
“It’s sensitive, personal information and I don’t feel comfortable with anyone that I don’t give consent to knowing my details,” she adds, explaining she would worry what “companies that don’t have our best interests at heart” would do with her information. If her data was collected, Ms Abdi said she “would not share a lot of things” with her doctor, and that she would like to withdraw what she has told them in the past.
The good news for Ms Abdi is that her GP practice is in Tower Hamlets, a London borough known for its rich history of activism inspired in part by the area’s multi-cultural identity: 43 per cent of people living in Tower Hamlets were born overseas, and 38 per cent are Muslim, according to official figures. And GPs in Tower Hamlets have no intention of handing over patients’ health records until they are certain it’s safe.
They have been at the forefront of the debate over the government’s ‘data grab’ plan to share medical records — formally known as the GP Data for Planning and Research (GPDPR) programme — raising concerns about confidentiality.
As a result, June’s data launch was delayed until yesterday. It was then put off again indefinitely after more than a million people opted out of NHS data-sharing in one month. NHS Digital outlined three ‘tests’ that would need to be met before patient data is collected – including an opting out option and a public awareness campaign.
But celebrations of the halt of this mass data sharing exercise covering all the records held by family doctors in England are cautious. While the government has conceded on some demands, they are yet to convince all doctors that patient data will be safe.
GP data sharing – The reception of St Andrews Health Centre, a GP practice in Bromley-By-Bow, Tower Hamlets. (Alice McCool)
The Royal College of General Practitioners and the British Medical Association has also called for the need for “greater and improved communications and engagement” regarding the project, while patients also spoke of privacy fears.
The NHS is home to an unusually rich and comprehensive data set that could allow breakthroughs in medical research. The data has proven vital during the coronavirus pandemic, and already improved healthcare services, such as the introduction of targeted bowel cancer screenings in 2006.
Nevertheless, the move has raised concerns, with some claiming that the data-sharing initiative has become entangled in a drive for profits in the healthcare system. When the public were not sufficiently engaged in a previous attempt by the government to collect the data in 2014, it lost the support of doctors.
“If we get this right, we can ultimately improve people’s lives. But I don’t think that’s where interests lie currently,” Tower Hamlets GP Ameen Kamlana claims.
NHS Digital has insisted that data from the programme will not be used for commercial purposes, while the government has argued the initiative will improve the health service.
When we reached out to NHS Digital for comment on this story, we were directed to their press release outlining the criteria they have committed to meeting before proceeding with the GPDPR.
Refusal to hand over patient data until certain conditions were met was started via a letter by GPs in Tower Hamlets and signed by a total of 113 general practices across the country, as well as the Clinical Commissioning Groups for North East and North Central London.
Dr Osman Bhatti, one of the GPs behind the letter, has thank you cards from patients lined up at his office in a GP practice in Bromley-by-Bow. “My rights are the same as patients rights, because everyone’s a patient. And we’d want the same thing for us,” Dr Bhatti said, explaining that as a patient you should “know what’s happening with all of your data and who’s looking at it.”
One of his concerns is around plans for a national data collection, which would take the control away from GPs who can currently define how the information is used locally and communicate this with patients. “If NHS Digital becomes a data controller they can effectively do what they want,” Dr Bhatti warned.
“As a government agency they can link it to any data — social history, medical history, insurance history — and so they can combine that together,” he added, explaining that medical records will only be “pseudonymised” and therefore he believes people could still be identified. A major worry for both Dr Bhatti and Dr Kamlana is losing their patients’ trust, and the impact this could have on public health.
GP data sharing – Safia Jama, Chief Executive of Women’s Inclusive Team at the community centre she runs in Bethnal Green (Alice McCool)
“Many women tell us they can’t tell their GP their whole story, but for years we’ve been saying they should trust them, and that what you say is confidential,” Safia Jama, chief executive of Women’s Inclusive Team, a community group working with women from minoritised communities in Tower Hamlets, said.
Her energetic all-women team is buzzing around her, preparing food parcels for a community delivery and chatting with clients.
Ms Jama says the women she has been encouraging to trust the health system have begun “opening up and getting help.” But she is concerned that those who already face barriers in accessing care — particularly people from minoritised groups not well-represented in the NHS, such as Somalis — will quickly lose that trust if they find out their private health records are going to be shared. She has countless stories of women she works with not trusting the system and the impact this has on their wellbeing.
In one case, a pregnant woman was asked by a midwife if she had experienced FGM (female genital mutilation). When she said she had, the midwife referred her to social services and the woman’s children’s school was contacted. Her children were interviewed. “Ultimately, you’re terrorising a woman who’s a victim herself.” Ms Jama said.
“Stories like that have been shared, and have damaged reputations,” she continued, adding that this results in the women she works with getting more sick than they should. From March to July, their centre dealt with three women who have been sectioned for mental health problems which could have been addressed by an earlier intervention if they had not been too scared to go to their GPs.
For these communities, trust in the system is already so precarious that it’s not hard for them to imagine what could go wrong if their information was shared further. In some instances, it’s already happening – from data sharing between the NHS and Home Office for immigration enforcement purposes, to the disproportionate number of referrals to Prevent (the government’s counterterrorism strategy) from mental health trusts or departments.
Kamal Hussain, a 47-year-old who works in financial services, said he found out about the GPDPR from a family WhatsApp group and opted out immediately. “I was a little bit worried that it wasn’t advertised. Normally on the radio you hear everything about Covid or other stuff,” said Mr Hussain, who says he does not trust the government, particularly following their handling of the pandemic.
“You’ll end up seeing less people going to the doctor because, especially with the Bengali community, people tend to be very private,” he added, using the example of the cultural hurdles young women and girls face when accessing reproductive health services.
A Department of Health and Social Care spokesperson insisted the shared data plans were for the right reasons: “The GP Data for Planning and Research programme will help the NHS unlock the benefits of data to help save lives.
“It will use a trusted research environment to protect the data, which means the data will only be accessed through a secure environment, by approved researchers, for specific projects. Individual data will never be visible to researchers.”
In June, a group of 120 medical researchers and experts, organised by Health Data Research UK, said GP health data was “crucial” for enabling research discoveries that could save and improve people’s lives.
Some experts have even warned that “misinformation” around the plans is putting life-saving research at risk and unnecessarily fuelling fears among the public.
“It’s not about whether I have something to hide or not,” said Ms Jama. “It’s about saying, actually, I had a private consultation with a GP on the assumption and understanding that what’s said in this room is only accessible to the GP practice. And now you’re telling me those private, intimate moments that I’ve had are going to be shared?”
“That’s going to cause huge mistrust.”