Ask the Expert: Pitfalls & Benefits of the Internet for Patients

Ask the Expert: Pitfalls & Benefits of the Internet for Patients

The Internet can have its advantages and disadvantages when it comes to hepatitis C. It allows for patients to learn more about about the virus, find resources and assistance, and receive support and acceptance from others living with hepatitis C. Along with the accessibility of the Internet, also comes some inaccuracies in the information available. We asked our experts, Sue and Corinne, what are the pitfalls and benefits of the Internet for the hepatitis C community and here’s what they had to say below.

Sue’s Response:

SueSimonBefore the Internet became available to us, doctors had the majority of control over what the average patient knew about his or her medical condition. Today, almost everyone has access to all kinds of information from medical journals, clinical trials, on-line communities, and sometimes even email with their healthcare providers. This has changed how physicians and patients interact. Some doctors enjoy managing patients who are using the Internet for information and find their curiosity beneficial. Others do not or cannot take the time to have in-depth conversations with patients who are using the Internet to obtain sometimes inaccurate information.

This accessibility can be a good thing or a bad thing. Patients often go straight to the Internet to try and figure out what diseases match up with their symptoms. This has led to sleepless nights as many times patients do not have the expertise to figure out if the information they have found is valid or applies to them. They may read something that is untrue and be led to other sites that reinforce the falsehoods. Some doctors have labeled this “cyberchondria.” While information can be empowering in certain circumstances, it can be overwhelming in others. The saying that “a doctor who treats himself has a fool for a patient” holds true for the patient who diagnoses himself.

One important issue is that information becomes stale very quickly. Treatment of diseases such as hepatitis C, certain cancers, and many other illnesses change so rapidly, that it is difficult for the patient to figure out which websites are up-to-date and reliable. Sticking to government websites such as the CDC or NIH, along with academic medical center sites such as the Mayo Clinic or Johns Hopkins, etc., and sites that post their resources such as Hepatitisc.net or HCV Advocate, is wise.

Especially for patients with serious or chronic diseases who are homebound, the sharing of their journeys with diseases such as hepatitis C, fosters a feeling of acceptance and offers patients a place to go where they do not feel all alone. They develop “cyber” friendships on discussion forums with people who truly understand what they are going through. I believe the social interaction is of benefit to patients who are feeling marginalized by hepatitis C.

Corinne’s Response:

CorinneMigaLiving in an era that is highly technological, the Internet is readily available, easily accessible and often within reach of our fingertips. The Internet serves as a host for countless resources and is utilized as means for educational and socialization purposes. It is easy to obtain the latest news and up to date information; often the results you can find are diverse. For individuals living with Hepatitis C it can be beneficial for a variety of reasons. First, learning that you or a loved one has Hepatitis C can be overwhelming and scary. Lots of different medical terminology may be thrown at you that can be difficult to understand. Therefore, doing personal research to learn the risk factors associated with a Hepatitis C diagnosis, understanding the symptoms, tests for diagnosing, progression of the disease and treatment options are all valuable questions that you can find the answers to online. If you are not already linked to medical care, you may be able to find a doctor to whom you can link with. Learning about the new treatment options that are available as well as options for insurance coverage, including patient assistance programs for financial resources is more information that can all be accessed online. Furthermore, finding support through various forums or websites is largely beneficial because you can learn from and receive support from others who are living with the same diagnosis. Reading about or talking with others allows you to benefit from their experiences and develop relationships to enhance your personal well-being.

However, there are a few downfalls to the Internet use. First, you can spend hours researching because there is no defined structure such as there is going to a library. Some websites may not be credible and some sites may even disappear. The credibility of a website should always be evaluated. With unlimited access to the Internet, anyone can post just about anything. With that being said, there may be uneducated opinions, stigma and inaccurate information that you will come across as well. So, the bottom line is that the Internet can be a useful resource, but should be used in conjunction with other resources, this particularly includes discussions with your doctor. Remember that what may have worked for one person, may not work for you. We are all very unique individuals, so always talk to your doctor or health care professional regarding the circumstances and best plan for your personal care.

Share your experiences with the Internet and hepatitis C in the comments below!

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