Imagine a world where your healthcare was personalised; where you were offered a specific treatment because your physician could calculate that someone of your height, weight, sex and physiology would respond better to one type of drug than another.
Imagine a UK where the NHS could plan its resources as precisely as possible; where it knew and monitored disease patterns and trends and invested in healthcare accordingly.
Sounds great doesn't it? If the NHS was a leading supermarket, it would doubtless use available information to achieve just that.
Tesco, for example, would know from historic data how many strawberries it's likely to sell in a given month, how many to order in, where they will sell, and how many will be discarded.
However, while the NHS has access to enormous data cohorts which could model many aspects of the health of an entire population and improve outcomes hugely, it is not currently using this information to the extent it should, resulting in wasted resources and inefficient care.
The NHS must own the world's biggest single collection of patient and medical data.
Broadly the data falls into two categories; data which can be traced back to a particular individual, and anonymised data - the UK population's collective data set.
Some data is already used in a basic way, hence the government health warnings about being overweight linked to type 2 diabetes. Some cancer charities also map out trends and outcomes.
But by and large the NHS is ignoring one of its biggest assets and its most valuable sources of intelligence and intellectual property: its database.
One of the main problems is that the NHS isn't clear about its medical records and how to maintain them.
It has poor governance of its key asset and a plethora of out of date and unconnected IT systems. There are also trust issues around handling and keeping the data.
The public are rightly wary of insurance companies or other third parties, like pharmaceutical companies, having access to medical records.
At the moment no one appears to be in overall charge of the information either, which, given its value, is a travesty.
Joining the dots
Large data sets have the ability to release valuable information. Take cancer, a disease the NHS prioritises in terms of resources. If you have "lung cancer", it could in fact be a multitude of diseases, all with various pathologies, treatment regimes and outcomes.
If we were able to phenotype the genes of each patient along with all the other metrics that can be readily measured such as age, weight, height, sex, blood group and so on, then we'd have some incredibly useful data.
Add into that heady mix X-rays, CAT scan results, cytology and even liver function, and the ability to model outcomes and treatments becomes much easier.
This type of data is so useful some study groups are already looking at tracking it so that disease pathology can be mapped out more precisely.
Getting the full picture
Our medical data is a potent tool for good and bad. Modelling it will identify disease hot spots and trends, but also hospitals or individuals that are performing outside normal parameters, whether better or worse.
However our mechanisms for reviewing data in this manner are somewhat crude. Take for example the issues surrounding the outcomes of the paediatric cardiology unit in Leeds.
The National Institute for Cardiac Outcomes Research (NICOR) identified the Leeds unit had a higher than average mortality rate. The data was taken over a three year period and was a partially risk adjusted analysis of patients who died 30 days post operatively.
The data set was relatively small and had to be collected over a period of time before any useful information could be gathered. The point is risk adjustments are currently carried out without detailed and large data sets which may help to benchmark problems.
Unless the NHS has a full set of statistics to look at the range of patients that Leeds was treating and what their other surrounding health issues were, it is almost impossible to identify whether or not Leeds was simply treating more challenging problems or whether there were other issues relating to the staff's skills and clinical decisions.
This difficult and highly charged situation has led to a great polarisation of opinion about what actually happened, and many of the issues were those of clinical preference and patient communication.
However, it illustrates the problems and blame situations that can arise when we don't know the full picture.
In the US, the government has seen the opportunities presented by this secondary use of medical data and pumped federal funding into this area.
It now incentivises hospitals to use electronic records to facilitate communication and aid the understanding of data.
However, in the US such issues are even more complicated by the fact that there are so many different hospitals with different IT systems and the real gains are to be made by medical insurers rather than the public in general.
In the UK, various study groups have looked at the overall acceptability of sharing medical records.
But, the difference between anonymous medical records and personal ones has not been explained to the public and there is understandable concern about access permissions and security, which needs to be overcome.
Power to the people
The answer may lie in asking the public to provide consent. We have a voluntary blood donation system that is the envy of other countries.
The same could be said for data collection. If patients were asked to provide aspects of their data to a secure entity on an anonymous basis, they may well respond positively.
A DNA profile can be collected easily via the painless collection of cells from the inside of someone's cheek; more easily than a pint of blood. It could provide a launch point for the public to volunteer medical data in combination with genetic data.
Around four percent of the population regularly give blood. A similar number have had cancer at some point in their lives.
These people and their families would be a good start point for the voluntary collection of anonymous data.
It would be a good start on something that would be a phenomenally valuable project in the long term and would also allow the NHS to monetise its IP for the greater good of everyone.
Elizabeth Ward is founder of intellectual property specialist law firm Virtuoso Legal.
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