With last week being patients experience week and May being the month for raising awareness of clinical trials globally (peaking for International Clinical Trials Day 20 May), the May #AusCT chat is a perfect opportunity to talk about the many ways in which the public can be involved in clinical trials.
For most of us when we think of being involved in clinical trials, we think of taking part in a clinical trial. But increasingly, as researchers and industry struggle to recruit to clinical trials, and there is more scrutiny on the therapeutics that governments are prepared to fund, the role of the patient/health consumer/carer/public (choose your favourite term to represent the non-research community) is broadening.
And it is about time. In most other industries, the customer has become the key stakeholder, and addressing their needs the key to success. It seems the medical research community and therapeutics industry are only just starting to catch up in taking the consumer perspective into account.
So when it comes to clinical trials, what opportunities are there for the public to get involved? And what support is required for all stakeholders of clinical trials to make it happen? When is it most appropriate, and what types of roles can consumers take on? What’s been your experience as a consumer rep, trial participant, or researchers working with the public, positive or negative?
Jo Root (@positiveage), a person with substantial experience advocating for and representing the views of health consumers through her work at the Consumers Health Forum of Australia, will lead and moderate the discussion this week. Please join Jo at 12.30pm AEST (Sydney time) Fri 5 May to share your health consumer and/or professional experience and views on how the public can be involved in clinical trials, from education to participation to partnership, and in improving the experience for others.