|
Monitoring is a pain in the …
Do we need monitoring of what ERN-LUNG is doing. Of course we do. We have to show the added value of ERN-LUNG for patients, for care teams, and for the European Union. This is the case not only because the European Commission (EC) is funding the ERNs, we all spend time and resources to make ERN-LUNG happen and we have to prove to ourselves that this is time well spent.
If we agree to the above - that we have to show what we are achieving - the next question will be how we can most efficiently do this. Nobody will seriously propose to count patients as an indicator of quality of care. Some calculation of the product of [numbers * quality = Indicator] would be nice, but such a quality indicator is not a trivial thing. One rule of quality management is to only rely on measurable indicators like numbers, waiting or survival times. When we tried to establish bench-mark discussions in CF care, we realized that the CF center that we all thought was the best in our country, actually was ranked at very low end of all centers. The explanation was simply the over-representation of patients waiting for a transplantation, self-understood they were the sickest of all of the patients and they biased the functional and survival data.
Let’s take another example: Quality of care should increase with care team members education and training, i.e. courses, meetings, and congresses. If we try to calculate this we might take [number of staff attending education * number of congresses = Indicator]. The more, the higher - the better? It is clear from these few examples that it is not that easy.
We should define meaningful quality indicators. These usually should be aligned with guideline recommendations normally based on evidence. This is what has been developed and is being implemented in pulmonary hypertension. Those who had the pleasure of attending our ERN-LUNG Annual Board Meeting in Paris this spring, have heard and were impressed by the reports. And, as a consequence, e.g. the ILD Core Network has decided to start developing quality indicators for lung fibrosis patient care. This is a complex and tedious way but, on the long run, will enable us to measure quality of care. Once we have quality indicators like these for all of our Core Networks we don‘t have to count inadequate numbers of patients anymore. Then, we will be able to show the achievements of our network.
Returning to our initial question (“Do we need monitoring of what ERN-LUNG is doing?”), it is obvious we cannot wait until we have really meaningful quality indicators for all of our patients. The EC wants to know, and we have to show how many patients we see, how much we invest to be able to see and treat those many patients. This is far from what we want to show (improved quality of life and/or improved survival). But, if we do not report on these surrogate parameters, we will not have a chance to develop and implement the really meaningful quality indicators.
You already got my point? We have to deliver the numbers the EC asks for, until we can show we have better and more meaningful data to offer.
Therefore, please, report your patient numbers, your publications, your educational activities, and what else the EC is asking for.
And, at the same time help us work on more meaningful quality indicators for the future. |
