Patient bloggers at healthcare conferences: ‘real’ journalists?

Like some of my most deliciously niggling inspirations these days, this one started on Twitter. Arthritis patient advocate, speaker and a Stanford University Medicine X e-Patient Scholar Britt Johnson tweeted this:
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To which patient advocate, speaker (and also a Stanford University Medicine X e-Patient Scholar Carly Medosch who blogs at Chronic Carly) responded:
 
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It was Carly’s observation that caused one of my eyebrows to flick skyward, unbidden.

 That’s because, since 2011, I’ve applied for and received media accreditation to attend national medical conferences so I could cover the proceedings for my Heart Sisters blog readers (here, here, here and here, for example). 
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But I couldn’t merely show up at these conferences and “claim” to be a journalist. 
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I first had to demonstrate in advance to the conference organizers some semblance of credibility as a patient blogger so they’d know I wouldn’t be wasting both their time and the time of the busy conference presenters I wanted to interview.
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I know, I know. Right now there are real journalists reading this who are choking on their coffee at the use of the words “journalist” and “blogger” in such close proximity within the same paragraph. Or, as former Canadian broadcaster Michael Enright (one of my favourite real journalists) once mused in an on-air radio conversation:
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“Talking about citizen journalists is like talking about citizen dentists!”
Here’s how patients, patient advocates, caregivers and/or citizen dentists can now attend a medical/healthcare conference:
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  • register as a paying delegate (full-price)
  • register as a patient advocate for a reduced rate (like the American Society of Clinical Oncology – ASCO – conference in Chicago in May, which offers a discounted $295 Patient Advocate rate reserved exclusively for patient advocates and not intended for medical professionals). You qualify for this lower rate if you work or volunteer for a national not-for-profit patient advocacy organization.
  • apply for official media accreditation if you can demonstrate that you write/edit an online blog, or play a key role in a social media medical/patient forum (conference registration fees are normally waived for all accredited media granted a press pass)
Many medical conferences still have clear guidelines restricting media accreditation to those journalists working in traditional media.  For example, the Canadian Pediatric Society has these fairly typical guidelines if you’re interested in covering one of their conferences with a press pass:
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“To obtain a media badge, a journalist or media representative must provide appropriate identification, such as a business card or letter of assignment.
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“Freelance journalists must provide a letter of assignment, written and signed by an editor, on the official letterhead of a recognized news organization, to certify that they are covering the conference on their organization’s behalf. ”   
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When I first applied for media accreditation to attend the 64th Annual Canadian Cardiovascular Congress in Vancouver in 2011, my application as a patient blogger was seriously considered. I was asked to submit a formal online application with a link to my Heart Sisters blog and a detailed description of both the subject matter I cover as well as my readership reach and demographics.
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Here’s how Jane-Diane Fraser of the Heart and Stroke Foundation (who coordinates media accreditation for this Congress) explained to me their stance on accrediting patient bloggers:
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“We see bloggers as valuable contributors to sharing health and science information and in engaging others in the conversation.
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We treat bloggers exactly as journalists and ensure that they too meet our guidelines but, since they are a different type of media, we look at them through a different lens and research each blogger who applies to ensure they qualify.
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“We have in the past denied people media accreditation because they do not meet our criteria. They are not arbitrary decisions: we review each case and some have been escalated to ensure it is the right decision.”
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While Jane-Diane may invite bona fide patient bloggers to apply for media accreditation at these medical conferences, here’s a list of those who need NOT apply:
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  • book and magazine publishers
  • publication and broadcast outlets’ sales, advertising, or marketing department representatives
  • industry representatives
  • specialized in-house magazines and industry newsletters
  • public relations firms and advertising agency representatives
  • corporate, university, or hospital public relations, advertising or marketing department representatives

It would be difficult – some might say impossible – for patients, patient advocates or caregivers to simply show up at a medical or healthcare conference and waltz in the door with no credentials while claiming to be a traditional journalist.

One of the reasons for strict gatekeeping is that a press pass basically gives you free range access to all delegates and speakers at a medical conference, including admission to all conference sessions, workshops and keynote presentations.

It is also your key to getting inside the Media Room – usually a separate quiet area where you’ll have access to desks, printers, phones, private interview space, and helpful staffers who can help you book interview appointments with the specific speakers/researchers you want to meet – or can offer suggestions for good human interest story idea you may have overlooked in the conference program. You’ll often even find a corner table where coffee and light meals are laid out for while you’re busy writing.

Bill Jeffery is the National Coordinator at the Centre for Science in the Public Interest, an independent health advocacy organization with offices in both Ottawa and Washington.  He tells me that while he’s also open to offering media accreditation to qualified patient bloggers at CSPI conferences, the accreditation process may not always go smoothly:
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   “I probably would accredit a patient blogger, although I do vet applicants if I am not familiar with their work.  Most journalists who request credentials are legit, though one time we declined a videographer who tried to get access to make a video report for an unnamed client.  But he sneaked in anyway by lying at the registration desk!”
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If you do apply for and receive media accreditation to attend an upcoming medical conference (Congratulations!) – here’s my own advice:
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  • Check into the Media Centre as soon as you arrive at the conference venue. Introduce yourself to the conference staff working there – they will help you get oriented and settled in. Give them lots of notice if you’d like them to arrange interviews for you.
  • Be realistic (as Jane-Diane Fraser reminds us about the Canadian Cardiovascular Congress: “We encourage bloggers to apply for media accreditation if the information being presented is a good connect with their blog’s theme.”)  In other words, if it isn’t a good connect, either don’t apply in the first place, or at the very least, refrain from being one of those annoying types who try to weasel their own agenda into each Q&A session during presentations.
  • Be considerate of the journalists working alongside you in the conference Media Centre. Unlike patient bloggers, they’re likely working on tight deadlines.
  • Respect embargo dates and times. Those working in the Media Centre may receive advance copies of news releases, speech transcripts or other material about papers coming out of this conference. This material often includes a specified publication date and time of day coinciding with the conference speaker’s presentation of the paper.  Journalists must agree not to share anything about this story until AFTER this date/time has arrived. Do not under any circumstances try to scoop these news stories by tweeting, blogging or sharing anything about them on social media before the specified embargo time has come and gone.
  • Have fun!  Be friendly and open, meet new people, do more listening than talking, and enjoy this unique behind-the-scenes opportunity.

NOTE from CAROLYN:   My blog-turned-book,  “A Woman’s Guide to Living with Heart Disease  is based on some of the most popular of my 900+ blog posts about women’s unique experience with heart disease.  You can ask for it at your local library or neighbourhood bookshop (please support your favourite independent bookseller) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

 See also:

It’s no hobby. It is a vital service.”

My blog post in the British Medical Journal

Short vs long online articles: which are better?

The sad reality of women’s heart disease hits home

 

Q:  Should patient bloggers be offered media accreditation to cover medical conferences?

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9 thoughts on “Patient bloggers at healthcare conferences: ‘real’ journalists?

  1. Thanks for writing this. I believe that smart health conference organizers should not only allow patient bloggers to cover their events, but they should recruit and encourage bloggers to write about these conferences.

    Liked by 1 person

  2. Thanks for writing this post, Carolyn! I’ve been promoting it within some groups I belong to.

    I also wanted to point out one big reason against using press passes as a “solution” to patient inclusion.

    I wrote about this in a post a while ago, but basically, we need patients to be out and presented as patients if we want the practice of involving and listening to patients to become more accepted and adopted.

    Right now, it is more common for patients to be listed as CEO or Founder in marketing materials and event information than to be identified as a patient at all.

    It’s obviously not the whole aspect of a person, but an important thing to note in a medical setting where we want patients to gain more credibility.

    Liked by 1 person

    1. Thanks so much for weighing in here, Carly (especially since you were the one who inspired me to write this!) The importance of the “Patients Included” movement cannot be overestimated, as I also wrote about here. Right now, we need both: patient bloggers who will qualify for media accreditation to cover medical events for their readers, and patients in the audience/at the microphones/onstage to represent the patient voice.

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  3. Just left a 2 day Clinical Cardiiology Update Conference in Southeast. I AM a med professional, so had credentials to attend. Attended primarily to see if womens heart disease /Coronary Microvascular Disease and Coronary Vasospasm Disorder were discussed at all, as well as keeping my CME’s current as I am still Board Certified – yet no longer actively practicing.

    Sad to say not a whole lot at all about above topics… just typical cardiac presentations.

    No wonder we are so often misunderstood, and with all the upcoming changes in medicine too…. the providers/clinicians are under even greater strain to cut costs vs. best interests of patient at times, so they too are quite stressed.

    Your past blog I rang the bell and no one came… we are pretty much on our own I fear… so we as patients and women need to stick together and support one another. More important than ever right now.

    Thanks Carolyn for all you do.

    KIM, GA

    Liked by 1 person

    1. I really appreciate reading your perspective, Kim – although it’s even more discouraging when medical professionals themselves observe this lack of interest in women’s issues. I wrote about it (following a cardiology conference) here – which I summarized like this: “Out of over 700 scientific papers presented at this conference, I could count on one hand those that focused even remotely on women’s heart disease.”

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  4. Very glad you’ve qualified to attend medical conferences as a blogger, Carolyn. As a heart attack survivor, I rely on you for a “heads up” on new discoveries, research and insight into all things heart related.

    You can always be counted upon to make medical-ese patient-friendly and to give us the “straight goods”. Please keep up the good work!

    Liked by 2 people

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