The conference was addressed by six speakers; Sir Nick Partridge, Antonella Moretti, Dr Vittorio Martenelli, Aliki Vrienniou, Mary Baker MBE, Jean Hardiman Smith. The conference was concerned with patient rights in research and treatment, influencing the direction of healthcare decision-making and the ‘expert’ patient.
Research was discussed by two of the speakers and we were told that as much as 30% of clinical trials were cancelled due to insufficient numbers of participants with as much as 85% being delayed for the same reason. People were unwilling to enter trials for a variety of reasons with side-effects being a major factor whilst older patients or patients without children were more likely to take part. It was also noted that trials now require more participants and they run for longer. It can take up to 12 years to get a new medicine from bench to patient. Approximately 50% of MS patients were willing to consider taking part in a trial. Medical professional need to be good communicators and learn to use common language whether at time of diagnosis or when discussing treatment options.
We were told of the astronomical increase in medical cost associated with brain disorders in Europe which have increased from €386 billion in 2004 to €798 billion in 2010. Can this level of spend be maintained with the ageing world population? We were told that 60% of the NHS budget is spent on lifestyle issues e.g. smoking, alcohol, obesity etc. To my way of thinking Irish figures won’t be too dissimilar. How can that proportion of spend be changed? We need to develop ‘prevention’ models rather than treatment strategies where possible. We need to develop a strategy where the stakeholders i.e. patient and researcher take part in the process and in that way the ‘payers’ will get better value for money and there will be better patient outcomes. Healthcare should be treated as an investment rather than a cost.
The ‘expert’ patient was discussed. I am an expert in my pain and my symptoms and what I really want is to be able to communicate these to friends, family and professional. I need to know that they hear what I am saying and actually listening to me. I need to feel valued. I need to recognise my limits and operate within them. This sounds a lot like ‘self advocacy’ to me but a “rose by any other name...” Whatever we call it, it works and more people need to become expert patients. It doesn’t take long and the rewards can be tremendous.
References:
The 4th International Patients Summit was held on Friday 22nd May 2015 in the Hotel Barceló Aran Montegna, Rome. It was attended by 90 delegates for 24 Countries. Representing Multiple Sclerosis Ireland: Aoife Kirwan, Niamh McCarron, Declan Groeger Willeke Van Eeckhoutte, Lucina Russell
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