“Let Patients Help”: Nurses and e-Patients

Joy Jacobson is a health care journalist and the poet-in-residence at the Center for Health, Media, and Policy at Hunter College, where she teaches writing to nursing students.

In the March issue of AJN, a letter writer responds critically to my news report, “Leveling the Research Field Through Social Media,” published last October. My report summarizes some recent trends in medical research, including patients using Facebook and other social networking sites to push for the funding of research into treatments that the science may not support. I go on to discuss PatientsLikeMe, which describes itself as “a health data-sharing platform” designed to “transform the way patients manage their own conditions.”

The letter writer objects to the idea of patients sharing their own data online. Can vulnerable, mentally ill patients, she asks, consent to participate in online research? Is enough being done to safeguard them? “I suggest we disseminate information to nurses that helps them steer patients away from Web sites such as PatientsLikeMe,” she concludes, “until programs and processes are in place to better protect the public we’ve pledged to serve.”

Several PatientsLikeMe researchers responded to this nurse’s points; a synopsis of their responses was included along with the reader’s letter in the March issue. “What we are doing is new and as such should be scrutinized frequently and rigorously by peers to ensure we are meeting the ethical standards one would expect for our patients,” they write. “We believe our […]

2016-11-21T13:10:25-05:00March 30th, 2012|digital health, healthcare social media, patient engagement, patient experience|3 Comments
Read More

Tilting the Earth

Elizabeth R. Plumer, PhD, JD, is a biochemist and intellectual property attorney. She lives in Saco, ME.

When an MRI revealed that my four-year-old daughter’s brain cancer had returned, I took the only action possible: I bought a dog. I scoured the Sunday papers and found just the puppy I was looking for, a Rottweiler. No deep psychological analysis was necessary to decipher my choice. I wanted a dog to protect my daughter from external threats, even if it could not protect her from the one threat that mattered most.

We named our puppy, Maggie, after Rod Stewart’s Maggie May, because from the moment she entered our lives, she stole our hearts. Maggie whimpered through that first night until I fell asleep on the couch with her gently snoring on my chest.

It was like having a newborn in the house again, and just as I had filled photo albums of my daughters, I took pictures of Maggie and my girls together. In one, taken the first summer we had her, Maggie lies in the shade beneath the swing set as if on sentry duty for my four-year-old and her seven-year-old sister. My girls hold steady on their swings and smile into the camera. The younger one wears one of my husband’s T-shirts over her bathing suit and sports a pixie haircut, […]

2016-11-21T13:10:51-05:00January 30th, 2012|patient engagement, patient experience|6 Comments
Read More

Giving Noise a Red Light

By Marcy Phipps, RN, whose essay, “The Soul on the Head of a Pin,” was published in the May 2010 issue of AJN. She’s a frequent writer  for this blog.

This stoplight noise meter showed up at the nurse’s station last week.

I have to admit—we didn’t take it too seriously, at first.

It looks like something you could buy in a novelty shop, shelved next to lava lamps and strobe lights. And it’s modifiable; buttons and dials on the back of the gadget allow not only for sensitivity adjustments, but also give the option of changing the type of alarm that sounds when a noise infraction is detected. The default alarm warning is a soft-spoken, female “quiet, please!” that can be translated into Spanish, French, or German—but there’s also an option for a shrill siren, which seems ridiculous, considering that much of the cacophony of critical care is owed to noisy alarms and ringing phones.

We even discovered how to record our own admonishments (which opened the door to countless mischievous possibilities . . . not that we’d indulge in that sort of thing, of course).

In seriousness, noise reduction is vital to promoting a healing environment. In a recent article in Critical Care Nurse, the links between sleep deprivation and altered physiologic processes specific to the critical care population are reviewed. Noise reduction guidelines and recommendations from […]

2016-11-21T13:12:28-05:00July 8th, 2011|Nursing, nursing perspective, patient experience|2 Comments
Read More

You Mean You Want to Talk? A Patient’s Perspective on Speed Psychiatry

With over 2 million U.S. adults living with panic disorder, and twice as many women as men suffering from it, health care providers should ensure they give patients all available options for treatment. Medication may work for some, but there are alternatives. I know because, despite what my psychiatrist said, I did get better.

2016-11-21T13:13:44-05:00March 18th, 2011|patient engagement, patient experience|5 Comments
Read More

Comment ground rules

1. Please be respectful.
2. We moderate all comments.

Content disclaimer

Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
Go to Top