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.
This is an excellent example of open access empowering patients to make choices about their healthcare. But while in this case citation data and abstracts were sufficient, in many cases full text access is vital for patients to understand their conditions. Unfortunately for Eric, the disease continued to spread despite more surgery:
The tumors now moved to the lungs. I was told by Dr. Einhorn that I would never be cured but that they could try to extend my life by “salvage” chemo or do a clinical trial of Avastin. Back to the net – my research suggested that salvage chemo should be tried first.
The treatment was successful although with many side effects: deep vein thrombosis, loss of nails on hands and feet, chemical induced loss of skin, severe peripheral neuropathy. Back to the medical journals to learn more about treatment options.
But do medical professionals listen to their scientifically informed patients?
My oncologist now considers every treatment suggestion that I give him because he knows that I have done significant, specific research on my condition.
So how important is a knowledge of the literature with the patient community?
I have had opportunity in the last few years to advise at least three other cancer patients (non-Hodgkin’s lymphoma, advanced stage testicular cancer, and brain cancer), all because they know I can find relevant information to help guide their treatment.
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?