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Connected data for improved healthcare
The economy is rarely out of the headlines and when healthcare is mentioned by financial journalists, it’s usually a negative story about a hospital services being reduced due to financial pressures or a criticism of a lack of investment in the NHS. What is rarely talked about in the news is the potential for health research to attract investment into the UK which in turn can create jobs and improve the economy.
At the end of March 2012, the government launched the Clinical Practice Research Datalink (CPRD) – an e-health secure research service – that aims to improve public health, develop new treatments for patients faster and attract investment in the UK’s life sciences sector and economy.
A unique data set
The CPRD is a key part of the government’s economic plan for growth is the service set up to enable health researchers to access anonymised person level NHS data and linked NHS data such as GP and hospital records. Access to the anonymised data is only granted to approved researchers for approved research projects.
The NHS is a unique health system that, unlike most other countries in the world, has a rich source of information about millions of patients with important health information spanning many years. This NHS information is attractive to health researchers who work for universities in the UK and abroad and international pharmaceutical companies who are developing new medicines and medical devices for patients across the world.
Approved studies using anonymised information from the CPRD service are already being funded by commercial companies that are based overseas. This will see income coming into the UK rather than all health research being funded from government/public money. And potentially, overseas investment will help to improve the economy and may lead to the creation of more jobs in the UK.
CPRD information has so far helped to produce published health research papers on over 1,000 research studies including: the investigation of childhood cancers; preventing thromboembolic events (blood clots etc) in the elderly; understanding the causes of pain and depression; and identifying genetic risk factors for serious adverse drug reactions.
The use of people’s GP and hospital medical records for health research may help to attract investment in the economy but clearly it must benefit people’s health too.
Recent media coverage of the debate about why people should share their medical records has reinforced people’s concerns and confusion about why their personal information is being extracted and who is having access to it.
People can object to their medical records being used by the CPRD by speaking to their doctor. While I understand some people’s view that they may want to do this, I want to explain why I feel it is important people don’t object.
So that we reach all our goals of successfully fighting disease and preventing illness in family and friends we really need every person to share their medical records and every GP to allow their practice to join the system. By doing this, people could potentially be saving someone’s life or helping to find a new treatment for a rare disease.
In addition to health research, anonymised medical records give a valuable insight that helps the NHS to assess if clinical care guidelines are appropriate and that the right treatment is used at the right time in the right patient. For example, through the extraction of people’s GP and hospital medical records, health researchers can study the benefits and side effects that may occur in the use of treatments used in the elderly.
For instance, this will include patients who have a range of other diseases, may be on other medications and may not actually take every dose of every drug.
This real world safety information is crucial to providing safe, high quality healthcare for people and this data shines a key light on medicines used during pregnancy, in children and importantly about vaccine use and medical devices, like pacemakers.
Research by international pharmaceutical companies and international academia should be seen in a positive light. Researchers from pharmaceutical companies are the people who can deliver much needed new medicines.
Once a drug is on the market, the safety and effectiveness need to be monitored. The data also has a large part to play in getting new improved treatments into the NHS for both common and rare diseases. Information from medical records can make an invaluable contribution to clinical trials. Powerful efficient clinical trials means there is the chance to enable the treatment to be available sooner.
The vast majority of health research takes place using anonymised medical records that are only released to approved health researchers under very strict obligations covered by legal agreement. The confidentiality of health data used outside of clinical records is overseen by a range of independent committees and ensures that the data stewardship approach is of the highest level. In over 20 years working in this area I am unaware of any privacy issue with research use of medical records.
Using people’s medical records for health research requires very little time of GPs and other healthcare professionals. If you see health research like the ultimate jigsaw, it may be that you are struggling to find that missing piece of the puzzle. If people object, the picture may not be complete.