Online Social Networks for Chronic Illness – Time for Providers to Take Them Seriously

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

That’s from an article in the technology section of today’s NY Times, which draws upon a report from the Pew Internet and American Life Foundation about how people with chronic illnesses are finding connection, support, and information in online social networks like DiabetesConnect.

Chronic illness can be isolating for many reasons: you often can’t explain a condition’s relentlessness and complexity to those around you; at the same time, you may be homebound or to some degree limited in the types of activities you can engage in.

Providers should be aware of such online networks and the role they play for patients. Patients get useful information about self-care, and they feel less alone—though some who study online social networks do caution against any sites where the mood is focused entirely on the negative. Good feelings and bad (like good information and bad) can both be infectious on the Web, as we’ve learned during recent political debates.

Is Health Information Technology a HIT with Nurses?

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“Don’t design an information system and then say, ‘OK, now let’s change our workflow to make the system work.’ First, design the most effective workflow that delivers safe, efficient, high-quality patient care. Then ask ‘How will this system enable me to do that?”‘ —Linda Burnes Bolton, vice president and chief nursing officer at Cedars-Sinai Medical Center in Los Angeles

Health information technology (HIT): it’s a hugely complicated topic and, with $19 billion in federal stimulus funds accelerating its adoption by medical offices and hospitals, it’s going to have an increasing impact on the way nurses do their jobs over the next few years. […]

2016-11-21T13:25:04-05:00July 20th, 2009|digital health, nursing perspective|0 Comments

How Secure Are Your Medical Records? Farrah Fawcett Discusses Possible Breaches in Patient Confidentiality By Health Care Providers

“As time went on and more stories appeared, Fawcett said she grew convinced that information about her medical condition was being leaked by someone at UCLA. Whenever she sought treatment there, word always got out. Even when the tabloid reports were false, she said, they were based on a morsel of truth.”

Photo by k.steudel, via Flickr.

ProPublica‘s Charles Ornstein has conducted an interview (co-published yesterday in the Los Angeles Times; the article includes a short video) with Farrah Fawcett about living with a terminal illness under constant media scrutiny. Fawcett has been particularly critical of the National Enquirer, and of UCLA Medical Center for not protecting her medical records from employees who may have been releasing information to the media. At one point, she even set a trap to prove her suspicions were correct. As the Obama administration makes digitized health records a priority in its health care reform plans, how might this affect patient privacy, and are you (and your institutions) ready for the issues that might arise?

–Jacob Molyneux, AJN senior editor

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