From 1 September 2021 anyone who is registered with a GP in England. Will have their medical records copied and stored separately for research and analyses purposes. This data could be shared outside the NHS. While the data will be changed so an individual cannot be identified. It will be coded in such a way that the patient details can be determined if required
I’m not a medically trained, or data protection professional. so I will not be advising you on what you should do. Instead, I will look to present the key points in what the government and NHS digital are proposing. Some key thoughts and concerns made by experts in the fields. I will also share my own thoughts.
After reading the article you will have an understanding of what will be happening with the medical data held by your GP. The information contained within this article and the linked resources will enable you to decide on what you want to do.
What The Government Is Proposing
From 1 September 2021 NHS Digital will collect patient data from GP surgeries in England. The shared data will allow the NHS too.
- Monitor Long Term Safety and Effectiveness of care
- Planning better health care and services
- Prevent the Spread of infectious disease
- Use Data for health research to develop new treatments
The government and NHS plan to use the data collected from GPs in the following ways.
- Develop future Health & Social Care Policy
- The planning & commissioning of health care
- Taking steps to protect Public Health
- In exceptional circumstances provide you with individual care
- Enabling research
Data on living patients registered with a GP in England as well as any patient who dies once the collection of data has started. Any data that could be used to identify the patient such as your NHS number will be replaced by a unique identifier.
The Unique Identifier will prevent anyone from identifying you from the collected data. However, the unique identifier can be used to reference the original patient records. NHS Digital has confirmed this will be indeed the case. NHS digital has even confirmed this will be done on occasions when required.
The NHS digital information on the proposal has the full list of what data they will be collecting from September. However, it will include data on all aspects of your health including.
- Physical Health
- Mental Health
- Sexual Health
NHS digital will not be collecting all GP surgeries data on patient and again they provide the full list, but it will include.
- Written Notes
- Images Letters & Documents
- Coded data over 10 years old
- Data that cannot be shared under law such as IVF treatment
What Other Professional Bodies Think
The Guardian reported that the Doctor Association UK (DAUK) are concerned that the planned changes could erode doctor and patient trust.
The BCS charted institute published a press release in which it states that more need to be done to increase public awareness of the planned changes and that all processes that use the collected data are transparent.
My Thoughts
I have no issue with my medical data being shared within the NHS if it is being used to create better health care. My concern and the reason why I’m considering opting out of data sharing. Is details on whom this data will be shared is unclear and suggests that it could contain partner agencies from outside the NHS. This concerns me especially as the unique identifier can potentially be used to identify me.
What Can You Do
If after reading this article you have decided that you are comfortable with the changes. Then you don’t need to do anything as the changes will be introduced automatically.
If you have concerns and have decided you don’t want your data to be shared. Then you will need to opt out using one of the two options below.
- Complete a type 1 opt-out form and send it back to your GP. By opting out your GP will only be able to share your data when it relates to medical treatment.
- Alternatively, you can apply for a national data opt-out which will prevent NHS data from sharing identifiable data.
Conclusion
I’m sure the British government and NHS digital would be doing a better job in explaining their plans for the collected patient data if patients living in England had to opt into the program rather than opt-out.
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The government & NHS Digital have suspended their plans on using GP patient data. I include a link to an Observer article published on the Guardian website. https://www.theguardian.com/society/2021/aug/22/nhs-data-grab-on-hold-as-millions-opt-out
I, for one, am pleased that the government has made this decision.