Dr. Karen Ryan:

I would like to respond to the specific question that was asked about clinical information systems. Those of us involved in palliative care are fortunate to have a minimum data set for specialist palliative care activity and some activity in palliative care support beds around the country. The value of the minimum data set is limited because a paper-based system is used by many services. The minimum data set predominantly counts the number of patients who are seen, rather than more sophisticated measures such as the quality of the patient experience and the outcomes of the care they receive. A move towards an electronic system to support that would free up front-line staff to provide care. It would also allow an expansion of the quantity and quality of data collected.

If we are to focus on the idea of continuity of care in clinical information systems, we need to promote the transfer of information across the various settings of care. Essentially, we want the patient and his or her family to have a seamless journey of care. At the moment, information is limited and restricted to the individual settings where patients find themselves. It would be of huge benefit if we had the ability to facilitate the electronic transfer of information across systems.

The out-of-hours issue is also of relevance to clinical information systems. If general practitioners or primary care teams that are looking after patients had a facility that enabled them to communicate effectively with out-of-hours services, including ambulance, emergency department and specialist palliative care services, and if patients were able to register their preferences regarding the place where they receive care or the type of care they might receive in the event of an unanticipated out-of-hours situation, it would be of huge benefit in improving the quality of care provided to patients.

The majority of patients are treated in their own homes. One of the quality performance indicators used in Scotland is the percentage of time that a patient spends at home in the last year of his or her life. We are not able to calculate that from our existing health care system data.