The age of information awaits the NHS and its patients
Only by adopting a new and radical mindset can the healthcare industry reap the benefits of up to date, accurate information, writes Mark Flannagan.
Improved data is critical for making the government’s NHS reforms work. Without access to accurate, relevant and usable information, patients, clinicians and policy makers are not able to make rational decisions within the healthcare market.
It is essential that patients are able to make informed choices about their treatment and the clinical outcomes for their conditions based on high-quality, up to date and user-friendly data and information. Knowing as much as possible about their condition helps patients understand what they have to deal with, which makes for a better patient/doctor relationship. Too often the NHS is letting patients down to such a point that they are not even able to get a basic understanding of their disease. It seems that the NHS is determined to protect a patient’s privacy to a degree that is institutionally secretive, and any attempt to open up access to data is being countered by the words “patient confidentiality”, even though in doing so it is effectively harming patients.
When I took up the role of chief executive of Beating Bowel Cancer I wanted to know the figures – how many people were dying or surviving, and what the detail was. My requests were met with comments such as “it’s too difficult” or “too complicated” to get this information. And, “the best available” information was up to four years out of date. Even though it is perceived that we’re doing quite well at providing cancer data I was told we would have to wait for vital information and figures relevant to diagnosis. This cannot be allowed to continue. If we are to design a health system that meets the challenges and can be measured on how it is doing then it is critical we know how many people are being diagnosed and when.
The current “system” is slow to respond to requests for data and, too often, we have to accept the lowest common denominator. Any conversation around data always turns to a discussion on how incredibly difficult it is to get it right and that we first need to build the means to get this data, to gold-plated standards of quality and security.
The problem we face is with information policy the process has become a more important driver than the desired outcome. It does appear much of the debate seems to have been prejudiced by the NHS’s previous experience with IT procurement. As Jeremy Taylor of National Voices and co-chair of the Future Forum’s information work stream told HSJ, the information agenda had been “ceded to IT people, who had disappeared up their own technological complexities”. We have to challenge this mindset and say it is no longer acceptable.
The first challenge is to use the data that we already have in a way that is meaningful, user-friendly and easily accessible to both patients and clinicians. That is why, back in September 2011, Beating Bowel Cancer launched its Bowel Cancer Map to fill gaps in information and make up-to-date data on bowel cancer available to key stakeholders. With the excellent support of the Northern and Yorkshire Cancer Registry and Information Service we took the radical step of providing access to incidence and mortality figures by using postcode access. A surgeon member of our medical advisory board recently told me he is desperate for up-to-date information about how he is doing compared to the surgeon next door because it makes for better outcomes. It is very difficult to achieve this when the figures are not available or out of date.
Beating Bowel Cancer believes health secretary Andrew Lansley was spot on when he said: “High quality health and care services depend on good information. The right person having the right information at the right time can make all the difference to the experience of a patient, service user or carer.”
The NHS has to respond positively by accepting that we live in an information age, where nothing can be left unknown and patients and clinicians have access to the right data when they need it.
We cannot allow the best to be the enemy of the good when it comes to providing information. “Quality” should not be used as a barrier to access of information. Patients are smarter than many give them credit.
They can interpret and use information when provided. So, despite the promises outlined in the DH’s information strategy, we need a proper approach that is not just about IT systems but is about giving patients access to the information about their condition they need to improve their care. If we get this right, then it would truly be the information revolution the government is looking for.