Managing Infertility Online

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Three Ways to Get More From the Internet and Social Media

by Brian Loew, CEO, Inspire
Published in Resolve, for the journey and beyond, Spring 2011

Type “infertility information” into Google and gape at the 4.4 million results. Try “diabetes resources,” and you’ll get 176,000 results. “Diet tips?” 874,000 results. “Breast cancer information?” 124,000 results.

In this information age, patients look to the Internet to become empowered help cope with medical challenges. But too much information can be paralyzing, discouraging, distracting… and even result in poor decision making.

Patients and caregivers have unprecedented access to online information. They march online for health information and support through online communities in increasing numbers. Online health inquiries have an impact on decisions and actions. According to a study by the Pew Internet & American Life Project, of the Americans who searched online health information, there are clearly more positive experiences than negative ones.

So how do you successfully find the information you need to make informed decisions as you decide how to build your family?

1. How to Construct Good Internet Searches

Too many online searchers don’t take enough time to learn how to construct good searches on Google, Yahoo! and other search engines. Casting a wide net usually leads to the kind of results cited above. You don’t need 4.4 million articles on infertility. You need several resources that answer your specific question.

It may seem basic to say, but think narrowly and use specific search terms. Create a search, then narrow it. If you’re searching for infertility resources about “donor options,” a general article will give you information that you can use to refine your search. Then you can search by adding specific terms such as “donor egg,” “donor sperm,” “donor embryo.” Keep drilling down, and you will narrow your results to a more useful and manageable list.

For those newer to online researching, I recommend taking a few minutes to read about best ways to search Google. There are similar pages to help you navigate other search engines.

2. The “About Us” Page Might be the Most Important One You Read

When you find an online health news site or community, do you learn the source of the information before you start reading? If a site is sponsored by a physician, a hospital, a life sciences company or a consultant, you will learn important context to help you determine the validity of what you’re reading. Not all “news” organizations are purely news organizations, and not all commercial web sites and online communities are biased. Transparency is the watchword here. Some of the most vibrant and useful — and sometimes contentious — conversations in Inspire’s 175 communities involve patients sharing different online resources, with discussions of the validity of the information. Bias and value are in the eye of the beholder, and all online health searchers should know
the source of what they’re reading.

3. Use Facebook, LinkedIn and Twitter to Research Providers and Hospitals

Is your doctor online? Is your hospital? If it’s important to you that your medical resources are online, here are a few quick ways of finding out more about your providers.

There are many online rating services for physicians and hospitals, some free, some paid. I’d caution you that commercial ratings agencies do not always capture all relevant information. An example: You may find a site that offers details about malpractice verdicts against physicians. But important information on some malpractice lawsuits settled outside of court may not be included in those reports. Also, bear in mind that you may not be reading a balanced, non-biased review of a hospital or doctor.

LinkedIn can be useful to learn more than a doctor may have revealed on his or her physician practice website. Empowered patients know the importance of establishing connections with their clinicians. LinkedIn profiles might feature a nugget of information — where a physician went to college, or his or her hobbies — that could help patients get to know the doctor better.

If you’re looking to learn about a hospital, go online to Found in Cache. Ed Bennett’s site is a go-to online resource hailed mostly by healthcare business leaders — the provider community of physicians, vendors, marketers and hospitals themselves. But patients can quickly find a list of hospitals that are using social media, specifically Facebook, Twitter and YouTube, and can link to them. Again, recognize that these resources are only a part of the overall picture.

The power of healthcare social media: “Altruism scales”

At Thanksgiving, health activist Amy Kiel of the Una Vita Bella blog penned an open note of thanks to social media. She wrote: “Thank you for fostering education, empowerment and better health for me and my family. Because of the ‘power of me’ that I found by utilizing social media, I am healthier, more
confident and have more hope than I had prior to working with you.”

Kiel is using social media to help her and her family’s health. By leveraging the best of social media, Kiel has become an online resource for others. It illustrates what Susannah Fox of the Pew Internet & American Life Project meant when she wrote recently, “Networked peer support, research, and advice can scale. In other words: Altruism scales.”

BRIAN LOEW is CEO of Inspire, a New Jersey-based company that partners with patient advocacy associations to create and manage online patient support communities. Inspire partners with RESOLVE on the RESOLVE’s two online support groups: Finding a Resolution for Infertility Support Community, and the Living After Infertility Resolution Support Community (www.inspire.com/partners/resolve)