Every member of BODMA accepts without question that properly conducted clinical trials are the gold standard of all clinical research. Unfortunately outside of the research environment, the concept of cancer care being a ‘lottery’ depending of where you live and who you see, has elicited many articles in the national press and the production of many and various different league tables. It may interest and horrify many of you to know that many, probably the majority of hospitals treating cancer patients can not easily tell you how many new cases they diagnose each year. Hospital information systems, unlike clinical trial ones are generally geared towards contracting services and providing test results but not providing prospective clinical information on a per patient basis. An example of this is that the contracting currency for the health service is the ‘FCE’ (finished consultant episode) - this measures the time a patient may spend as an inpatient and links both a diagnostic and procedure code to the stay. The latter may indicate a cancer, but if there are for example 200 FCEs for breast cancer in a month, it is not easy to tell if these are new cases.

Hopefully now, this will change. In April 1995 we saw the publication of a key report - ‘Policy framework for Commissioning Cancer Services. A Report by the Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales’ - known as the Calman-Hine report, after the 2 CMOs for England and Wales (Drs Kenneth Calman and Deirdre Hine). The main aim of the report is to create a network of care in England and Wales which will enable the patient irrespective of where they live to be sure that the treatment and care given to them is of a uniformly high (comparable) standard, and as close to their home as possible. The new structure is based on a network of expertise, with 3 levels of care being proposed, within a ‘hub and spoke’ framework:

Cancer Centres (in the main the old radiotherapy centres)

will provide expertise in the management of all cancer within their locality. They will also provide specialistl diagnostic and therapeutic techniques including radiotherapy and chemotherapy.

Cancer Units (= DGH)

will be developed to be of a suitable size to support clinical teams with sufficient expertise and facilities to manage the more common cancers e.g. breast, lung, and colorectal.

Primary Care (GP teams)

will liaise closely with both Cancer Centres and Units to develop the most appropriate referral and follow-up patterns to ensure the best outcomes are achieved.

Everyone agrees that this report formalises the structure which has been evolving over the last few years in England and Wales. So, how does this report affect BODMA and its members? To be able to evaluate the success of the proposals made in the report, it becomes imperative that accurate, timely and most importantly comparable information is collected by all Trusts for cancer patients.

The report is governed by 7 principles, number 7 being:-

...cancer registration and careful monitoring of treatments and outcomes are essential….

As a result over the last 2-3 years all Trusts involved are beginning to ask themselves several questions:-

1. what information is required nationally, regionally and locally to be able to monitor the implementation of Calman-Hine?
2. how much of this information is currently available within existing hospital systems?
3. what extra information do we need to collect?
4. what is the best process for collecting the data that are required, and how can we ensure its accuracy and timeliness?
5. how will hospitals be monitored, and what will the format and purpose of such monitoring be?

Defining national, regional and locally required datasets, plus associated processes for collecting such data are the main priorities currently for many of us involved in this area of work.. Ultimately the way ahead will be for all data to be collected at source by clinicians, at the time of seeing the patient, and entered directly by them into the hospital information systems. Unfortunately in the majority of hospitals this is still several years away. Hopefully however we will soon be confident that all hospitals are collecting comparable, albeit minimal data for all their cancer cases and the seventh principle of Calman-Hine can become a reality.

However, as ever, our local ‘lord and masters’ are already requiring monitoring data and there has been a huge increase in the number of data manager and co-ordinator posts becoming available within the NHS (these tend to be advertised in the Health Service Journal, published weekly on Thursdays!). Although not fundamentally trial and research orientated, such personnel all have to adhere to the same data management philosophies and practices as those of you within clinical trials.

BODMA can now become a major force, in providing the training and support these people need, aswell as encouraging all of us to broaden our horizons. Datamanagement is a rapidly escalating area of work and all of us should be enthusiastic of how these exciting developments within the NHS will have a knock-on effect into the trial and research worlds. The days of paper proformas are almost over, with total electronic data transfer between health service and research organisations becoming a distinct possibility.

Return to the BODMA Home Page