Monday, 1 November 2010

Information is the new oil – have your say on what’s collected and how it’s used

The new health information strategy was published for comment on 18 October. “An Information Revolution” is a grand title but it’s not rocket science below the lid (the word “cloud” doesn’t appear at all). If we did do all the things in the strategy, and most are simple and really do-able, it would provide the basis for revolutionising care and bringing health systems into the 21st century.

There is a focus on patients using information to actively participate and be in control of their care. Renal Patient View is cited as an example for others to follow. Many will welcome the move away from the desire for the same approach to be taken in every NHS organisation to the need for all systems in whichever NHS organisation they are to be able to talk to one another.

Clinical audit, a focus on outcomes and patient experience – all central aspects of “Equity and Excellence Liberating the NHS”, the coalition Government’s White Paper on health all need high quality information. I recall thinking when the phrase “right person in the right place at the right time” began to be used first “and what about information?”. I was thinking about clinical notes, which many of us recall being in a different place to the patient and the doctor! But the thought works equally well for information about quality.

People say “knowledge is power”, I would add “but only if you share it”. One of the principle reasons the kidney world got a national strategy, the Renal National Service Framework, was the fact that the kidney community had set clear clinical standards and used data routinely collected for direct patient care to do high quality clinical audit across the whole UK. The Renal Registry is the bedrock upon which our understanding of kidney services is based.

Information is the new oil, a catchphrase I heard recently, meaning information is a much under-used resource; it’s certainly true in healthcare. We are data-rich but often don’t refine crude data into information to produce knowledge and understanding. One could go further and say it’s the new soil – it helps ideas grow.

The year on year comparisons of trends encourages individual kidney units to measure the impact of your quality improvement initiatives. Comparison between units and networks raises important questions. I for one always look to see where Salford Royal Hospital is ranked but it’s not about league tables – you can’t directly compare Salford with Newry; but we did notice they did very well and did pick their brains and pinched their ideas for our dialysis quality improvement project. Variation between units in peritoneal dialysis rates, access to the transplant list and the rates of unplanned dialysis starts provide a powerful stimulus to examine and share practice. Thoughts that began from looking at the data leading to conversations with colleagues who apparently “are going better” have often been the start point for significant improvements in the care of people on renal replacement therapy. The next annual report of the Renal Registry will be out soon – do use it to ask questions and to generate improvement ideas for 2011.
Kidney disease is of course much wider than renal replacement therapy. We need ways to gather the information and understand where we can make improvements for people with advanced kidney disease, stage 4 and 5, and those who choose the conservative kidney care or no dialysis option. Patient related income measures (PROMs) may have a big role in defining quality in such patients. We need to know more about what type and how much inpatient care our patients need, what’s responsible for the variation in complication rates and what aspects of team culture and social care factors affect outcomes. The joining up of information, intra-operability, should help examine these factors better.

Information of course isn’t just for healthcare professionals and managers. Patients want to know what kind of services we offer and how we compare. Patients are the most powerful agents for both common sense and change for improvements sake. They are pretty good at spotting change for churn’s sake; but we do need to be even better at giving patients and the public information in the way they want and can use. Clinic letters to patients can be really helpful or they can be full of jargon. Health literacy varies across our population. Learning styles differ. Approach to risk and cultural beliefs about health, medicine and illness vary. These factors may make a big difference to people’s experience and outcomes. It is an area fertile for research. Have a look and comment on the information revolution.