Data or Die: Information Needs in the
Brave New World of Health Care

21st June and 22nd November 2007, London

Click here for the event presentations

On Thursday 21st June, NCPC held a conference exploring the significance of data for planning and monitoring of palliative and end of life care services and the implications of that for future data collection. The first of its kind, it set out to challenge current thinking about the use of data, the power of benchmarking, and to launch a major revision of the NCPC Minimum Data Set.

Professor Mike Richards set the scene by describing the progress being made in the development by the Department of Health of the new End of Life Care Strategy.  He emphasised the importance of establishing a set of measures by which improvements in end of life care that were brought about by implementation of the strategy might be identified.

Peter Tebbit introduced the delegates to the significance of data. He explained how it is necessary, as the means to demonstrating not only to commissioners, but to the general public, the service users, carers and families, that services are provided equitably, efficiently and cost-effectively. He described the type of data needed: about population need, about access to services, about to what degree the planned outcomes of palliative care services are achieved and about the resources employed to provide such services. Peter then showed how, at PCT level, benchmarking of differential need against patient activity data and resources employed could provide important insights into the comparative efficiency and effectiveness of services. Benchmarking could therefore be a useful tool, he said, but its wider application would be dependant on a new collection of workforce and financial data. He concluded by setting out what commissioners would need to know in order to move to stronger commissioning practice.
 
Barbara Monroe, the Chief Executive of St Christopher’s Hospice, then gave the delegates a provider’s perspective on the significance of data. She stressed that her interest in data was dependent on how much effort was needed to collect it, what that would cost and whether the information produced would help to manage and improve the quality of the service.  Barbara divided the data needed into five groups:

• Firstly: the patient activity data; collecting information on OOH admissions, day care, physiotherapy, complaints and drug errors.  She explained how standards could be created out of this information; for assessing carers, emergency homecare and living allowances.
• Secondly: the data required for measurement against New Targets. Ethnicity, deprivation, care homes, adherence to pathways, education, exclusion (e.g., learning disabilities) and preferred place of death are all subjects of vital new standards, and therefore necessitate data collection.
• Thirdly: the data to demonstrate the success or otherwise of new specialist activity.
• Fourthly: data that would help in service redesign and dispelling myths about certain aspects of care, such as the number of deaths on transfer from care homes.
• The fifth group was data about costs which might be better recorded against common templates for expenditure and clear service specifications.

Bob Park, the Director of the North East London Cancer and Palliative Care Network, then added a Network Perspective. He introduced the aims of the Network, namely to reduce the burden of cancer on the population by improving quality of life for those affected by cancer, improving the survival rate and promoting health in order to prevent cancers. He ran through his Network’s five year plan, and how palliative care fitted in to this strategy. Palliative care links, he said, into the Network plan in all settings and stages of the pathways, but its implementation needs to be driven by needs, demands and cost assessment for which data was crucial.

Dr Clare Littlewood of the Marie Curie Cancer Care Institute in Liverpool led the project to revise the National Council’s Minimum Data Set to make its products more meaningful to clinicians, providers and commissioners. She explained why MDS was so important: to develop and implement service standards, to establish a resource allocation for commissioners, to achieve nationally consistent reporting on palliative care provision, and to evaluate patient needs and best practice models. She described the various phases of the project including the arrangements for consultation, piloting and external assessment.  The revised MDS was now ready for implementation and was launched today for data collection from April 2008.

Ann Eve, NCPC’s Minimum Data Sets Project Manager, gave the delegates practical advice on implementation. She explained that the MDS data had been changed to reflect more accurately the work of specialist palliative care services and in this way in provide a valuable baseline. Compared with the current MDS some data items have been omitted and others have been added, such as the 16-18 age group, contacts without referral, and a more detailed ethnicity appraisal. Ann ran through the details of electronic submission, how to check MDS before submission and left the delegates in no doubt that they should contact the team at NCPC for any advice that may be needed.

Richard Harris, Information Analyst for the Workforce Review Team, described the joint NHS/National Council survey of the specialist palliative care workforce undertaken in 2006.  He referred to the data obtained about the number and geographical distribution of both specialist nurses and consultants in palliative medicine.  He then went on to indicate that the survey was to be repeated in 2007 in order to provide data helpful to the development of the new End of Life Care strategy and the completion by PCTs of the baseline review of end of life care services. He put forward a case for the formalisation of the survey as an annual data collection, mandatory within the NHS.

The final session of the conference was devoted to round table discussions of some of the key challenges arising from the presentations.  The principal outcome of that was a large majority of delegates were in favour of the revised MDS being made a mandatory collection in both the NHS and voluntary sector.

Speakers' Presentations (from both the events):