Reaching out to real people: Tools to humanize stories Association of Health Care Journalists April 2016 Cleveland, OH

John Novack Communications Director Inspire www.inspire.com @TeamInspire

About me, about Inspire The leading social network for health, connecting patients and caregivers. About me • Former AHCJ board member and officer • Former newspaper reporter and healthcare trade publishing editor/group publisher • Currently communications director at Inspire

About Inspire • Privately held company based in Arlington, VA • 750,000+ members • 200+ health communities • 100+ advocacy partners

About healthcare social networks

Different types, different missions, different audiences

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•  Inspire

•  PLM

•  WEGO

•  MyHealthTeams

•  Facebook groups

•  Nonprofit organization-sponsored groups

•  Patient-created portals

Reaching nonprofit associations

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•  Going through communications dept. is usually best route

•  Get to know policy/research people

•  Get to know advocacy org’s scientific advisory boards (SABs)

•  Smaller organizations sometimes have great networks, BUT some are

not as responsive because leaders are affected by the disease for

which they’re advocating

Online advocacy channels

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• Change.org

• Care2

• RALLY.org

When things don’t go well

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“The tendency...especially, in headlines, to use a format like: "Person with X Disease does Y Achievement" instead of saying "Person does Y with X Disease.” The first way make it seem like having the health condition is the real, big achievement and the action/hobby/achievement is much diminished. I view this along the lines of person-first language--the evolution where we first consider what the person DOES or is interested in, versus what disease they HAVE.” --Carly Medosch “My favorite journalists have taken a real interest in me as a human being that continued after the story was published---that makes me feel incredible---like I am so much more than just my disease.” --Linnea Olson “If an organization is going to spend time helping compile info/facts for your article but it's edited out, the least you can do is offer a polite heads up that it didn't make the cut instead of them finding out the hard way.” --Danielle Burgess

When things don’t go well 2

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“If discussing step therapy, don't say the patient failed on the drug. The drug failed to work in a given patient. We don't fail. We just put this crap in our bodies and hope for the best...(Also), find a patient that is able to speak for a cross section of the community and not one who is simply seeking the limelight. Those of us who will likely be reading those stories can spot that a mile away and frankly, it's a turn off.” --AnneMarie Ciccarella “Please do not sensationalize prospective cancer treatments. Too often I've seen headlines proclaiming ‘Cancer Cure Identified by XYZ Organization’ only to find that the research was preclinical (cellular level) or in mouse models.” --Anne Loeser “Patients want to help but the way general media plays out people are hesitant to talk to the press because of the potential for a ‘gotcha question’ that makes them look stupid.” --Deb Discenza

Tips

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“I appreciate having an open-ended question, such as, "Are there any other thoughts you have on the subject?" This opens the door for me to go into more detail on material that I wasn't specifically asked about but which I feel is relevant, and also gives me an opportunity to offer possible considerations for additional directions that the piece could go in.” --Michael Bihovsky “I love it when reporters are willing to email me to make sure I'm quoted/represented accurately. ” --Danielle Burgess “Attend not just to the dramatic, picturesque near-death story with the happy ending, but also to the messy underbelly of the story: the persistent mental health needs of patients, the difficulties in getting appropriate care, the inadequacy (sometimes) of the health care system, the stress and trauma experienced by family members.” --Tina Pittman Wagers

Tips 2

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“It is vital that there is a balance between actual facts and personal stories. For example, stories related to mental illness and violence.” --Gabe Howard “Interviewing patients or caregivers is very different than interviewing subject matter experts, and the expectations must be different. While a subject matter expert wants his/her information out there and is doing this to help the cause, more or less, the patient is sharing something personal, often with the hopes of helping others who are going through the same thing. ” --Marijke Vroomen Durning “I am sick and tired of hearing about ’patient stories.’ They are everywhere. So what? Instead, focus on a group of patients who've exhibited an exceptional response to a therapy and try to determine what attributes they have in common.” --Anne Loeser

Tips 3

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“Sometimes journalists are very careful in the way to ask cancer patients, afraid to offend. I think in the moment you are willing to give an interview you are ready to tell all.” --Alexandra Leighton “Realize that the person going through the health crisis also has deadlines--everything from doctor's appointments to therapy appointments, to school-based appointments in addition to caring for the individual and likely having a full-time job outside of all of this. If you can be flexible on the interview calls/times/dates that would be most helpful. That way the individual can bring his or her best self to the interview. It will be well worth a bit of a wait.” --Deb Discenza “I have Charcot-Marie-Tooth, a disease that is rare and also ‘invisible.’ The shaming and judgment of people with invisible diseases seems to be a real problem and one that journalists could try to tackle.” --Joy Aldrich

Tips 4

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“Individuals with chronic illness fight to be recognized and have their limitations acknowledged and supported, but it doesn’t mean that we are in some way sad or unable to live a full life. For most of us it’s just that the world is set up in a way that can be difficult for our bodies and it’s very hard to change a system that is built around productivity and individuality when you need help a lot. Having a disability really shows you the need for a large and flexible community system.” --Emma Caroline Lewin Opitz “I like first-person accounts from patients who tell it like it really is, not some fluff piece about how inspirational or brave they are. I am very protective of my story and not writing it in a way where someone comes away thinking I am brave but inherently think less of me or my capabilities.” --Christopher Anselmo “Real people inspire both trust in and engagement with your message.” --Casey Quinlan

Stay in touch John Novack Communications Director Inspire john@inspire.com 800-945-0381 www.inspire.com @TeamInspire