On the 12th May, it was announced that NHS Digital plan to gather patient data held by GP surgeries in England, and feed it into a centralised database. The information will be anonymised, with the hope that it can help advance healthcare services and medical research. Giving NHS digital access to your data is a choice but NHS digital have assumed consent and have been relatively quiet about how people can opt out of this scheme. Initially, people had till June 23rd to opt out but with heavy backlash that this date this did not give enough time for patients to make an informed decision, the scheme is now set to begin on September 1st.
What are the Concerns of this system?
The database will collect data on the physical and mental health of patients which will include information on diagnoses, symptoms, medicines, as well as ethnicity and sexuality. This database is set to make the information centralised so that it is readily available to external organisations. The data itself will be supposedly anonymised (no name, address, NHS number) but many people believe that detailed data like this cannot truly be anonymised. Many critics are worried that this data could be sold to commercial companies who may financially benefit, and a centralised system as such makes any security leak very substantial. Do you think the potential benefits to medical research and drug development outweigh these concerns?
How to opt out
An opt out system assumes consent from all patients and allows their data to be used unless they say otherwise. You will learn in medical school that to give consent patients must be able to understand the risks and benefits of a decision, weight them up, come to a decision and then relay that back to whoever is asking. But is everyone giving consent in an opt out process? Who is making this decision for those without capacity to consent this? What about those who haven't even heard about it? The choice to make this an opt-out process is deliberate. In addition, the process of opting out is arduous - patients must first find a well-hidden form online (here), fill it in and post/email it to their GP practice to process. This puts even more pressure on GP practices, who already have a large backlog of patients to see. It would be much more simple to make this an online form. Why was this decision made? Can you think of any benefits and drawbacks of having an opt out system?
- Sharing your confidential data with third parties may lead to improvements in health services or advancements in medical research and the development of medicines. Would you consider opting out of this system?
Weigh up both the advantages and disadvantages of data sharing. - An opt out system for organ donation was recently introduced in England. This means all adults in England are assumed to have agreed to donate their own organs when they die unless they have formally opted out. What are the ethical implications of this?