“Will progressive MSers take on Pharma and Academia in the same way that ALSers have done? You don’t need to read too many comments on this blog from progressive MSers to realise how frustrated they are with the slow progress in getting effective treatments. We the academic community are partly to blame; we often start trials without thinking about what happens if the study is positive, i.e. we haven’t really got a path sorted out for the licensing of repurposed drugs that are off patent; for example simvastatin.”
Paul Wicks. Subjects no more: what happens when trial participants realize they hold the power? BMJ 2014; 348 doi: http://dx.doi.org/10.1136/bmj.g368 (Published 28 January 2014).
….. The social contract of the randomized controlled trial is imbalanced: patients adhere to arduous protocols, are randomized to placebo, and are blinded to their health status. Although most participants (>90%) would like a lay summary of results, only a minority (<10%) receive one, with the remainder left with the option of paying around $30 (£18; €22) to read the results once the study is published in a peer reviewed journal…..
…. The concept of “scientific altruism” may be being trumped by “maximize your chance of survival.” For better or worse, digital tools enable greater self knowledge and rapid dissemination. The consequence is that scientific design, informed consent, and ethical oversight can be short circuited by patient led “disobedience.”…
…. With the new tools at their disposal patients will hold us all accountable in new and necessary ways. Patients themselves have already laid much of the groundwork; let’s ask them to continue building on these new systems together as equals….