What I wish my doctor could know is what he has no access to. That is all the data for medicines he prescribes. My GP is an incredible doctor but no one can do their best work with inaccurate tools or partial knowledge. This is my story.

I have no heart disease but an arrhythmia. As a result of this diagnosis I was put in a high risk category and prescribed statins. Prior to a brain injury I took statins for 15 years with no side effects and without incidence. Then after the brain and spinal trauma there were problems. My system had changed and side effects were rampant. I was prescribed three different forms of statins and they caused my normal blood sugar to elevate to diabetic levels and caused severe calf cramping. There were also mood swings, but I suspect this may have been provoked by the elevated blood sugar. My husband requested I check my blood sugar as he is diabetic and said I was acting like him when his sugar was unstable. I used his machine and then had lab tests. It was elevated, so after this I mapped and charted the effects of statins on my system. My doctor and I did not know about this side effect and when we heard about it and queried, we were told it was said to be minor and transient. So we tried again. After six months off statins my cholesterol was at a healthy ratio and cramping ceased whereas on the statins it was abnormally high. The benefits without side effects are sustained over the past two years.

I found the most useful information to guide my decision came from one of our BMJ patient reviewers. They explained that muscle cramping and elevated blood sugar were real, but not common side effects and shared that there were some statins that were less likely to cause these issues in susceptible patients. [1] Many patients in high risk categories want to stay on statins so it is good to know there are options.

Rory Collins et al could further contribute to research by moving beyond confidentiality agreements and finding ways to supply their data so others can verify and replicate the research. They could also explore the feasibility of new hypothesis testing through the existing data. “Evidence” without data and transparency is an assumption at best. I am opposed to people taking medications they do not need. Statins are strong medicines and can have unintended effects, on the other hand I do think statins may help those who need them. I have relatives who showed partial blockages and after statins these dissolved and on statins they remain free from heart attacks. Patients need all the information and so do their doctors if decision making is to be shared and informed. Shared data and transparency reduces research waste and increases knowledge.

(1) Matthews A, Herrett E, Gasparrini A, et al. Impact of statin related media coverage on use of statins: interrupted time series analysis with UK primary care data. BMJ 2016;353:i3283

Amy Price worked as a neurocognitive rehabilitation consultant and in International Missions before sustaining serious injury and years of rehabilitation. She emerged with a goal to build a bridge between research methodology and public engagement where the public is trained and empowered to be equal partners in health research. She is a BMJ Research Fellow, serves on the BMJ Patient Panel and is reading for a DPhil in Evidence Based Healthcare at the University of Oxford.