First Person: ePatienting

Becoming an empowered health care consumer comes with its own set of worries, and satisfaction.

scientists_521 (photo credit: (Illustrative photo: Bill Davis/Newsday/MCT))
(photo credit: (Illustrative photo: Bill Davis/Newsday/MCT))
I am at work and my heart is racing as I Google the terms “embryo quality + IVF.” Google returns 136,000 hits and I start reading. I can’t find anything useful, so I modify my search to “egg quality + IVF” and start reading.
I became obsessed with searching for health information online after my first IVF treatment. My doctor had told me that my chances of success were about 50 percent, so I had gone into the treatment cycle with an optimistic outlook. This changed quickly when my doctor entered the overly bright room where I was sitting wearing one of those unflattering patient gowns prepared for the embryo transfer. She explained that only two of our embryos had survived and they were not of the best quality.
The news that the embryos were far from perfect came as a complete shock. My infertility, I had been told, was caused by ovulation problems, and my doctor had never discussed the potential problem of poor embryo quality with me. She explained that when it comes to egg quality issues, there is a great deal of uncertainty and that she had seen poor quality embryos develop into perfectly healthy babies. I guess she was trying to tell me that my chances of conceiving were far from doomed.
That was not what I heard though. All I heard was poor quality embryos, which worried me. Yet, as I was sitting in this bright room in the patient gown, I was unable to articulate my feelings. Indeed, it is difficult to process new information, express feelings and ask informative questions that will help you understand your health situation when your doctor has just told you that things are not as good as hoped for.
Back at work I found myself obsessively Googling keywords related to egg quality issues and IVF. The online information was endless. Most of the websites I found were online communities where I could follow discussions between IVF patients who were giving each other advice based on their experiences. Reading these posts increased my sense of hopelessness, because they often personified women who had unsuccessfully gone through many more years of treatments than I had. Moreover, I was looking for an improved understanding of my diagnosis and treatment, but I did not feel that I could extract this kind of information from these online forums.
In between the online forums, my Internet searches also led me to websites written by IVF specialists. These were the sites that I trusted to provide me with factual knowledge, and I read them thoroughly. Slowly I started to understand more of the medical aspects of IVF and alternative infertility treatments. I found information that verified the information my doctor had already given me, but the Internet search enabled me to gain an intellectual understanding of my condition and treatment. Although much remained unclear to me, the intellectual understanding enabled me to articulate questions I had been unable to ask at the time of the embryo transfer.
When my pregnancy test came back negative, I met with my doctor to discuss the way forward. For me, this meeting marked the beginning of a new doctorpatient relationship, because my Internet research had changed my understanding of my role as a patient. Until this time I had envisioned upcoming doctor visits to mostly be situations where I would listen to and follow my doctor’s advice. She always discussed different treatment options with me and gave me the possibility to weigh in on what I felt was the best way forward. Yet, lacking any deep understanding of fertility treatments, my input had always been minimal.
The Internet, however, had made me realize that I could take a more active part in my treatment. I now saw the appointments as opportunities to get expert help understanding the information I had found online. Furthermore, with an increased understanding, I was able to form an opinion of what was the best treatment for me. Slowly, I was becoming an e-patient, shifting part of the control of my treatment to myself.
The Internet provides a wealth of easy access medical information, which creates tremendous opportunities for patients to take charge of their health, to investigate alternative treatments and to better understand their diagnosis. Yet, the Internet also presents challenges to people like myself who turn to online medical advice. How do we make sense of the online information without a medical background? How do we sort trustworthy information from inaccurate information?
Most of us don’t. According to research, most people who look online for medical information do not check the date and reliability of the information. Maybe even more worrisome is that a substantial proportion of Internet health information seekers reported feeling overwhelmed, frightened or confused by the information.
For me, the Internet has been a convenient and easy access information source. However, Web searching on its own also increased my anxiety. It was only when I used the Internet as a resource to communicate with my doctor that it truly empowered me. Unfortunately, cyber health care was not systematically incorporated into physician practices at my infertility clinic. My doctor never steered me to advantage Internet usages or encouraged me to share what I had learned online.
This is not to imply that my doctor was hostile to online patient health information seeking. On the contrary, once I shared my online research, my doctor embraced it and helped me become the empowered epatient I am today. Without this I would not have felt confident continuing sharing my online search with her and without this element my online search would not have served me well. Yet, what strikes me is that the health care system has not yet embraced the Internet and made it an integral and systematic part of its services.
It is two years since I sat in that overly bright room in an ugly patient gown as a passive receiver of the information about my embryos. I am pregnant with twins, which in addition to an enormous sense of happiness, also comes with an endless number of medical related questions and worries. How I deal with this is very different than how it would have been two years ago. The Internet has acted as a catalyst for changing my role as a patient from a passive recipient of doctors’ advice to an informed and active patient who has a relatively good understanding of treatment options, risks and success rates. As such the Internet has been a tremendous support for me.
There are, however, potential dangers associated with searching for medical advice online, some of which can be prevented through patient education facilitated by physicians. Indeed, the vast potential of the Internet to empower patients and foster patient-physician communication has still to be fully recognized and realized. One large step in that direction would be for health-care providers to actively welcome, encourage and help their patients become empowered e-patients.
The writer is a research scientist at the School of Public Health of the University of Haifa.