Eric Johnson, patent facilitator and cancer survivor

“Eric Johnson is an engineering professional working as a patent facilitator for a multinational company. One of his jobs is to find information and “connect the dots” related to intellectual property of competitors, to develop research strategies for his company. He is also a multiple occurrence Testicular Cancer survivor who used the medical literature to research his condition and inform his treatment. ‘I do not believe I would be alive today if it were not for the information that can only be accessed by the layman (patient) in online sources.’ This is a powerful example of the importance of access to the scientific literature for patients and Eric explains how it all started: ‘I was first diagnosed in 1993. Immediately, I sought all of the books in our public library about cancer care. Unfortunately, there was very little about the care of testicular cancer so I went on the internet and found the Association of Cancer Online Resources (ACOR) and specifically, TC-Net. This was extremely helpful to assure me that my care was standard and had an 80+% cure rate. Fast forward to 2006 when my primary care physician mentioned that we should probably check the tumor markers again. The results were a marker of 24,000 (normal is less than 10). I immediately reconnected with TC-Net and was told to connect Dr. Lawrence Einhorn at Indiana University. He responded within an hour and told me what I already knew, that I had advanced disease and should start chemotherapy as soon as possible, followed by surgery (Retroperitoneal lymph node dissection or RPLND). The expert surgeon he recommended, Dr. Foster, was based outside my area so my HMO (Health Maintenance Organisation) wanted me to use a local surgeon, Dr. Jarrad. I went to PubMed and did a citation search for journal articles by each doctor and found 104 by Dr. Foster (all related to RPLND) and 4 by Dr. Jarrard (all related to prostate cancer surgery). I used this information to convince the HMO that it was wiser to have me approved for treatment by Dr. Foster. I had approval in one hour after submitting the request and my local oncologist was amazed — both that I asked and that it was approved. Evidently this is not the usual outcome. If I had not had access to on-line medical journal information, I doubt if I would have received approval...’ Eric has a final plea for all those stakeholders who have the power to increase access, which includes publishers, funding bodies and researchers: ‘It’s frustrating to find only a limited abstract even when searching through PubMed, a part of the NIH. I’m lucky to work for a big company and have access to the full articles through our library, but not everyone has this luxury. Complete and open access to medical journals would be a real lifesaver for those looking for a little edge over cancer. Please help us out, won’t you?’”