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Internet connects patients with resources – and each other

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Posted: Thursday, April 12, 2012 12:05 am

At first it was all about the games for Jerry King, 77.  When she was 65, her friends from church would tell her about the fun games she could play on the internet, specifically a website called Pogo.

“I’m fascinated by word games,” she said. “It was just for fun for me.”

But the internet soon played a grander purpose in her life – a purpose that has transformed the lives of many seniors.

In 1999, when her husband Jim was diagnosed with colon cancer, she and Jim played internet games together to pass the time.

“I can remember sitting at the computer while he was lying in bed, and all he would say was, ‘Did you win that time?’” she said. “I sat there all night. I was looking for something that I could do and he could do that would take our minds off it all.”

Then she started searching the internet for answers to her many questions. What will happen? Can the doctors be wrong?

She would also go to the search engine and type in “families dealing with colon cancer.”

“It was a lifeline,” she said. “It helps when you know you are not by yourself. We tend to ask the question – ‘Why me?’ But it made me realize that other families were going through the same thing.”

Minority of minorities

King is currently among the minority of African-American seniors who have looked online for health information. Twenty-seven percent of people 65 or older consult the internet for medical issues, according to a 2009 “The Social Life of Health Information” Pew Internet & American Life Project study.

Among family caregivers who provide unpaid care to a loved one, such as King, 79 percent have access to the internet. And of those, 88 percent look online for health information, according to a 2011 Pew Center report

Numbers about how this information affects people’s decisions is even more telling. Sixty percent of e-patients say the information found online affected a decision about how to treat an illness or condition, according to Pew’s 2009 health information report.

Like King, 56 percent of e-patients said it changed their overall approach to maintaining their health or the health of someone they help take care of.

Although games transformed her into an internet user, King soon became hooked on researching medical information. The Internet was her “second opinion” to a doctor’s decision. It was her coach in knowing what questions to ask the doctor. It gave her tools and resources when she cared for her husband at home.

“It was my backbone,” King said.

The internet provides a kind of 24/7 support group for family caregivers, said Paula Spencer Scott, senior editor of Caring.com. It can be difficult for someone involved in eldercare to find the time to get out of the house to attend a support group at a specific time and place. With the internet, emotional and practical support is always a few clicks away, she said.

“Someone may be frustrated to bits at 2 a.m. because a loved one has sleep problems or has been having dementia hallucinations at midnight,” Scott said. “Caring.com members always tell us that they feel less alone, less isolated, and more supported because of the resources on the site.”

Grief dot com

For King, Jim’s passing was indescribably difficult, she said. It wasn’t that she had never dealt with death. She had many times, but this was different. It was her husband. And when Jim died, she searched websites for helpful ways to cope.

“There were many websites,” she said. “I’d type ‘families dealing with the death of a loved one,’ I began to read what other people were saying and how they got through.”

In a way, Jim’s death was preparation for losing her son soon after. Now King goes on Facebook almost every day. When she reads about someone else going through a rough time or that their child has died, she types in, “I understand,” she said.

“It’s allowed me now to reach out to people,” she said. “My life has been a journey. I have so much to tell.”

The e-patient community is powerful, especially in the age of social media, said Lee Rainie, director of the Pew Research Center’s Internet and American Life Project, a nonprofit, nonpartisan “fact tank” that studies the social impact of the internet.

“It’s one of the most dramatic impacts that we’ve see in the role of the internet in social life,” Rainie said. “These e-patients are becoming a lot more active in their own care and helping each other.”

Before 2000, men were the dominate internet users. But that year women started to catch up. A big part of the internet story for older women in America is being the primary caregivers in their families, Rainie said.

And 66 percent of these family caregivers are women, according to the National Alliance of Caregiving 2009 report “Caregiving in the U.S.”

Just as in King’s case, the internet became more attractive when women found they could use it to get good medical information.

Docs and dot coms

At first, doctors were not thrilled when people like King would come in with print outs and say, “Tell me more,” Rainie said.

“These newly empowered patients, for some doctors, were annoying,” Rainie said. “The attitude in the medical field has shifted. There are a lot more doctors who encourage patients to look at good websites.”

The best places to search are government sites like The U.S. National Library of Medicine or the Centers for Disease Control and Prevention.

These sites provide credible overviews. People who search commercial public-sector sites should make sure the articles seem well-researched with sources that are identified, and originally reported.

The National Library of Medicine also offers a guide on how to search the web for medical information. It encourages heavy cyberskeptism. People should look for bias, especially from companies trying to sell their products. They should also make sure the information is up-to-date and based in sound evidence, said Consuelo Hopkins Wilkins, M.D., outgoing director of the Center for Community Health and Partnerships of Washington University School of Medicine.

“I strongly encourage everyone to learn about health conditions that they have and those that run in their families,” Wilkins said. “It’s important to get your information from trusted sources and never let the internet be a substitute for a health care provider.”

Now, these empowered patients are reaching out to each other. Gwen Collier, 67, of South St. Louis, said she’s frequently on WebMD because it saves her time.

“You may be able to get a patient’s review on a certain procedure,” she said. “There’s so much you can get to help you make a decision about your own personal heath.”

Recently, she learned a friend, who is also African-American, had breast cancer. Collier and other friends tried to help this woman – who is not an internet user – find resources and basic information. Collier researched on WebMD, a popular medical website.

“It was amazing to see her confidence rise when she gained that information – which a doctor may not have time or take time to give in a consultation,” Collier said. “You can spend an hour, where the doctor usually can’t spend that kind of time with you.”

“Millions of knowledge workers are emerging as unexpected health-care heroes,” wrote Dr. Tom Ferguson in a 2007 white paper entitled, “E-patients: How they can help us heal healthcare.”

Like King, these “unexpected health-care heroes” are extending their life lessons to strangers on Facebook and online forums. King says it gives her great joy to reach out to people – whom she may or may not know – and offer information and encouragement.

“I think I have helped a lot of people,” King said. “When they write, ‘Thank you for your words of inspiration’ on my page, that makes me feel good. Like my living has not been in vain.”

Rebecca Rivas wrote this article as part of the MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America. This is the second article in a four-part series.

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