The Westminster Health Forum organise senior level conferences on public policy relating to health and healthcare issues. The session on Thursday 6th February was titled ‘The future for NICE in health and social care’ and whilst NICE and NICE processes were at the centre of discussions, the key theme running throughout the morning was that of collaboration and the patient voice.
The message was clear: NICE want to say yes to medicines that will benefit patients but this requires the right data and collecting that data needs to be a collaboration between industry, academics, patients and doctors. This was highlighted by the case of the FDA’s accelerated approvals programme. Only 20% of products with accelerated approval have shown benefit in confirmatory trials meaning resources have been directed away from effective treatments to pay for these ultimately ineffective ones. Whilst NICE want to bring effective, innovative medicines to patients as quickly as possible, to ensure resources are directed to the right medicines, NICE must be in possession of evidence.
Caroline Cake from Health Data Research UK talked about the collaborative UK wide effort to make datasets available to anyone and Luella Trickett highlighted that data is not just of concern for pharmaceuticals but also for medical devices, where it is much harder to conduct RCTs. Her hope was that NICE would participate in setting a standard for registries to ensure that data collected by these means are robust and fit for purpose.
By far the most inspiring talk of the day came from Emily Crossley, co-founder and Joint Chief Executive Officer of the charity Duchenne UK whose talk really summed up how effective collaborative working can ensure the right data exists for the benefit of all concerned. Duchenne UK’s Project HERCULES has brought together pharma companies, academics, clinicians and HTA agencies to develop a bespoke validated QoL metric, natural history model, burden of illness study and disease level economic model. The hope is that these tools will ensure that the right data are available to enable NICE and other reimbursement authorities to provide funding for effective medicines for Duchenne’s disease. The ethos of the project being that it is in everybody’s interests to ensure effective medicines are available to the patients that need them. The hope is that this model of collaborative working will become the norm.