Using the Internet to Manage Medical Issues
A recently released from the Pew Internet and Family Life Project found that patients and family members of patients are using the internet to learn more about chronic health issues and make treatment decisions. These health consumers reported that their on line searches affected their treatment decisions, the way they interacted with their doctor and day to day coping with the illness. The Pew Internet and Family Life Project reported that most patients (and family members of patients) who used the internet to research medical conditions reported feeling “...reassured that they could make appropriate health care decisions...relieved and comforted by the information...and confident to raise new questions or concerns...with their doctor”.
I have talked with hundreds of parents of babies and children with reflux who use the internet to find out more about the condition and its treatments. If the baby is crying in the middle of the night, a parent will simply hold the baby over her shoulder with one hand and use the other hand to google. It is likely a parent will find a significant amount of information and much needed support for managing the condition at home. Doctors are used to having parents quote studies and information they have found on the internet and for better or for worse, it has changed the way doctors and patients interact. Further, parents are greatly relieved to find another parent who can relate to their questions and concerns and offer parent tested solutions to home care issues.
As a parent, I have spent numerous hours on the internet to research health and medical issues, especially when my daughter needed a Nissen Fundoplication surgery to treat her Gastroesophageal Reflux Disease (GERD). The internet provided me with cutting edge medical research studies, tutorials for surgeons on the latest techniques and stories from patients and parents of patients. The time I spent on the internet helped me fully understand the mechanics of the surgery, the likely outcome and helped me to organize my thoughts and questions for the surgeon. I probably started with a two page list of questions but I managed to par the list down to about half a page. I am sure the surgeon appreciated only having the short list of questions! The internet research helped me feel more confident in my interaction with the surgeon since I was familiar with the information and the terminology.
The information I located on the internet also lead to some confusion about the surgery. All surgery has some risk of side effects and I had already located a pretty complete list of common side effects such as gas bloating, swallowing and eating difficulties and the inability to burp and belch. I had also read (with fear) about the rare complications such as adhesions and dumping syndrome. What really worried me were the stories from parents and patients about the few children who were worse after the surgery or needed further surgery. Interestingly, the Pew Study found that some of the patients who used the internet for medical research reported feeling “overwhelmed” or “confused” about the information they found on line.
The individual stories left me awake at night filled with fear. It helped to talk with the surgeon and gastroenterologist about the surgery, risks and outcomes. After my daughter had a successful surgery and I talked with other parents, I realized that the information I located on the internet did not represent a balanced view of the risks of the surgery. When a parent contacts me about the surgery, I can hear the fear in their voice and I know they have been reading scary surgery stories with unhappy endings. The truth is: the vast majority of the children who need GERD surgery have a positive outcome. The now healthy children and their parents live their lives all day and sleep all night. Their parents only log onto the internet to sign up their healthy children for the soccer team. The small scars are a tiny reminder of a time in their lives when reflux ruled their existence. On the other hand, the small percentage of children who had problems following the surgery are still up at night, leaving their exhausted parents tending to sick children 24/7 and desperately searching for answers. These parents are awake all night anyway so they log on to the internet and tell others their story in hope of finding a solution.
As you do your own medical research on the internet, be sure to check out the information with your doctor or medical team. They will help you sort out the information and make informed medical decisions. The patient support websites are an excellent way to find other patients and share questions and concerns. These sites will give you valuable information that only another patient can give you.
Link to the Pew Study: