Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA. Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.” It was a great opportunity for us to help healthcare journalists learn more about how to interact (and coordinate interviews) with patients participating in online communities like ours.
What better way to represent the patient voice than to actually have a patient speak on your behalf? We invited Pamela McGhee, an active member of PatientsLikeMe who had previously done some media interviews, to sit on the panel and provide some tips to journalists on what’s important to patients interviewees. Pamela was a welcomed and refreshingly enthusiastic panel participant who shared those tips (i.e., the importance of following up after an interview or doing your homework beforehand) as well as her experiences of living with MS and using PatientsLikeMe to “improve her life.”
Moderated by Carla, the rest of the panel included Dan Childs, the coordinating producer for ABCNews.com, and John Novack, director of communications at Inspire. Both had a lot to share about their experiences in coordinating and conducting patient interviews. A video highlight reel is below, courtesy of Joy Robertson at KOLR-TV.
In addition to having Pamela there to share her personal experiences of interacting with the media, we also handed out these one-sheets, which outline how to arrange an interview at PatientsLikeMe, as well as four of our own tips for conducting successful patient interviews.
Thanks again to Pamela for being such an inspirational and empowered patient, one willing to openly share her stories and experiences for others to learn from!
2 thoughts on “The Patient Voice Heard Loud and Clear at AHCJ ’11”
My girl friend was diagnosed with RR/MS about a month ago. After her hospitalization in the (unnamed hospital) we have gotten no help from them. No direction, what to hope for in the future nothing. My girlfriend has been on her own since she was 19 years of age and now depends on me for everything. Along with the medicines she takes she is a mental mess. Signed, LEFT OUT IN THE COLD!
I have to laugh… just yesteday – my daughter said she was perusing this in the Neurologist’s waiting room and was amazed that the lead MS Story was about the effects of heat. I had to comment because we laughed (a bit sarcastically) about that one. It’s hot & humid here at the moment!
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