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Talk to Us! Health Journalism from a Patient's Perspective

Talk to Us! Health Journalism from a Patient's Perspective

Picture of Katherine  Leon

katherine leon, health journalism, patient advocate, empowered patient, heart attack, reporting on health

As a patient who was asked to speak at the Association of Health Care Journalists 2012 conference, I felt a bit covert. I wasn't in a "backless gown," rolling my IV pole down the hall of some hospital's cardiac care unit. I wore an official lanyard and badge and mixed among health care journalists, yet I felt more like a dugout mom than savvy reporter.

My goal was to present the patient's view. And I tried, in each session, to "be the ball" and hear what was presented from the alternate perspective, my persistent viewpoint as a user and purchaser of medical services. What I found is that health care journalists often have tendencies similar to those of health care providers.

It's complicated. You can't walk in the patient's shoes unless you have the misfortune of battling illness or disease. So it is with physicians as well. They have to speak authoritatively about issues they have never experienced but know from study and observation.

Yet the patient can easily imagine what it would be like to change places with the doctor. We each have areas of expertise. We each have been in the role of teaching, advising, problem solving – that is part of being human. But how can a doctor train to be sick, overcome the barbarity of surgery, struggle, persevere, and survive? There is only one way for that to happen (and it doesn't involve Artificial Intelligence).

Here is one example of the great doctor-patient divide: nothing is more defeating to a patient than hearing how physically healthy we appear. An online friend who endures coronary artery spasm, has had six heart attacks (yes, 6), breast cancer, double mastectomy, and two additional cancer surgeries was told in her pre-op Friday, "Well, you sure look good."

The fundamental problem in this anecdote and ones like it is that the health care provider can never, ever relate to what the patient has gone through. Instead of using a little humility and common sense, the fallback position is to "put a positive spin on it." Perhaps this disengaged approach is a means of self-preservation. Medical providers do it all the time. And what about health care journalists? I think you do. Not intentionally or maliciously, but I think in some way, you may add a bias to stories that says, "But, you look great."

At AHCJ, the session "Evaluating medical evidence for journalists" touched on this tendency. I was fascinated to learn that often when the stats I read seem too good to be true, they are in fact, too good to be true! An attempt to present apples-to-apples can be a cider variety-to-carambola comparison, if the absolute risks and benefits are not reported along with relative data. Through my filter as a patient, it sounded as though this trend happens more frequently as the rarity of a condition goes up, or perceived importance of it goes down. (Note: One patient's "rare" condition is another's misdiagnosed fatal heart attack.)

And that – mortality – is what makes the patient force a powerful one.

We empowered patients work for everyone – for ourselves, our doctors, our families, the future, even for the benefit of strangers. And, we work for free. If you as a journalist want to learn, we'll teach you. If you want contacts, we'll make the call. Want to see a medical device? Check out one of ours. Sternotomy scar? Step right up. Everything a patient has to share, be it knowledge or hardware, can make a difference for someone, somehow.

This drive is what makes patient support communities a rich source of story ideas and background material for journalists. Whether an in-person group or on-line community, patient relationships aren't superficial. The connections we have are deep and long-lasting. For this reason, we are protective of our crew and have high expectations.

One more story about my online friend illustrates this solidarity. The week before her third breast cancer surgery, she noticed in her hometown paper that a young mom, a nurse, had survived spontaneous coronary artery dissection (SCAD) and was out of work, struggling with recovery and finances – not to mention, she was trying to care for a newborn and six-year-old. The American Legion was hosting a spaghetti dinner benefit to help.

This Good Samaritan, who probably should have been concerned with her own pre-op affairs, which included traveling to Johns Hopkins, got online to rally the troops. She posted to all the Indianapolis ladies on the WomenHeart Online Support Community on Inspire. A few replied but we knew there were more. I shared the news with our SCAD Support Facebook group. Those women jumped back over to Inspire. There were offers of money, baby goods, food to bring in, even physical support. In a matter of hours, all this was accomplished and plans made by several locals to attend the spaghetti dinner and lift up this young mom. The online messages of support were printed and included in a "goodie bag" of WomenHeart health information and small gifts. The day after the benefit, there she was online – a new member of our community, thankful for the support and benefitting from the wisdom of the group.

Wisdom is not easy to come by, especially for those with complex medical issues. And, for this reason, Twitter can be a health journalist's virtual encyclopedia. Imagine sitting in the tip-off circle, center court at the Carrier Dome. The stands are completely filled with patients, physicians, specialists, researchers, and caregivers knowledgeable in every health condition you ever wanted to learn about. There they are, firing off a never ending stream of material for you. Granted, they are "tweeting" simultaneously for the most part, but you have the ability to sift through, interact, or just file these nuggets of information. For even more concentrated data, "lurk" or participate in a tweetchat on a given topic. In this forum, you'll have patients and experts practically writing your stories for you.

Even Facebook generates content, to my surprise. On my SCAD page of articles and news, for example, there is a fascinating conversation going on right now among a group in the UK who accessed a particular article. One is a SCAD patient, the second a paramedic, and a third, an ambulance volunteer. The patient has been asked to speak to med students about her SCAD and heart attack. The paramedic and volunteer have discussed the article and believe they have no role in diagnosing SCAD because of the need for an angiogram to confirm. Two of us concur that their awareness will make a difference.

It seems likely that most all health conditions have a presence on Facebook at this point. Not every group or online community would welcome a journalist's interest, of course. But as more and more patients seek to partner with every stakeholder available to improve outcomes and advance research, it might just be a "golden hour" for journalists and social media.

As a survivor of heart attack caused by spontaneous coronary artery dissection (SCAD), Katherine Leon generated research of SCAD at Mayo Clinic using social media. She spoke at AHCJ 2012 on the panel "How Will Citizen Scientists Impact Medicine."

Comments

Picture of <span class="username">Guest (not verified)</span>

Katherine is an inspiration and what she and the SCAD survivors have accomplished is really amazing and incredibly inspiring. Now I learn she CAN WRITE,too? What can't she do? Mark Taylor

Picture of <span class="username">Guest (not verified)</span>

[...] www.reportingonhealth.org - Today, 11:12 AM [...]

Picture of <span class="username">Guest (not verified)</span>

I really appreciate your insights. Something big is happening here as patients connect and empower each other.

Picture of <span class="username">Guest (not verified)</span>

I thoroughly agree with your perceptions on this particular topic. Many Doctors are only to happy to see you as either a textbook case or just a condition, rather than a person with a condition. In many areas they fail to relate to the patients experience of living with the symptoms, and many cases fail to give them the information they so desperately need.

This is why many seek out others with the same conditions and why sites such as Inspire are a very valuable and important resource. Social media has become a vital source of connecting with people who have the same health issue, to get the answers and empathatic response to them that they fail to get when face to face with a Doctor.

From my own perspective of running a Patient and Advocacy Support group for Idiopathic Intracranial Hypertension(IIH), which is a rare and incurable disease, I would welcome any journalists interest, as I'm sure they would be able to highlight the lack of awareness and funding for research into this disease.

Picture of <span class="username">Guest (not verified)</span>

I continue to feel a disconnect between health journalists and patients. I wear both mantles as a medical journalist since the mid-80's and a cancer patient since 1996. Patients want high level medical information told in an understandable way with "heart" and respect for what they've been through and the challenges they face. They also want the whole truth: that the side effects of a new therapy are really tough, or you have to travel 1,000 miles to be in a clinical trial, or your specialist may not tell you about this new medicine because they don't make money on it. Interim data from a survey done by our organization, Patient Power, shows patients with serious illnesses are very active searching for new information (35% search daily). and the general news media is ranked almost the bottom as a source. Patient Advocacy groups and our "niche" site for serious illnesses ranked highest with social media in the middle. Much of this content is authored by leading doctors themselves, in interviews, or by other patients. In my view, unless traditional health journalists get more in tune with where patients are today they will be left behind.

Picture of Katherine  Leon

Andrew, 

You've touched on another key point: "the whole truth." Rather than attempt to save us from ourselves, physicians and health journalists must present complete and accurate information for patients to effectively participate in our own care. Even if, in their opinion, the information is "above us" in complexity, resources (online support communities, family, friends, nurses, case workers) exist for patients to take the info, break it down, and use it to advance our own health management.

Katherine

 

Picture of <span class="username">Guest (not verified)</span>

Well said, Katherine!

As you skilfully describe here, patients not only have real-life experience living with their particular diagnoses, but they also have the one precious thing that all journalists need: A STORY.

And as Dr. Mike Evans (of video-gone-viral "23 1/2 Hours" fame), warned his fellow physicians during his recent TED talk in Belgium, just giving people data is clearly not working.

And then he asked his doctor colleagues:

“Who would people rather pay attention to? A real live person who is like them, somebody who has walked in their shoes – or a brochure?”

Health journalists might well be wondering the same thing.

Cheers,
C.

Picture of <span class="username">Guest (not verified)</span>

[...] www.reportingonhealth.org (via @TheRealDanSfera) - Today, 2:09 AM [...]

Picture of <span class="username">Guest (not verified)</span>

[...] www.reportingonhealth.org - Today, 8:51 AM [...]

Picture of <span class="username">Guest (not verified)</span>

The amazing insight Katherine shares proves that Social Media is making a difference. Connecting patients to each other, to doctors, information and support groups is a vital need. Its more than time to put patients and their support systems together with the health team. Interaction & hearing each other is essential.

Picture of <span class="username">Guest (not verified)</span>

A truly inspiring story that is a must read for all journalists, healthcare professionals and consumers of healthcare..everyone! Social media is a great venue for patient engagement whether for personal sharing, information seeking, curating, advocacy or support. Please continue to tell your stories as the healthcare community is finally coming to the table with you and will continue to need your insight to improve quality healthcare and delivery. Also know that journalists are becoming more reliant on social media for stories and ideas as the economy continues to plunder us all. Thank you for this post and best of health to you.

Picture of Katherine  Leon

I'd like to offer a "reply all" with thanks for your enthusiasm on this topic. (I've been having techinical difficulties with my email account, so apologies for the delay in posting a response.) It does feel like a new dawn for patient-doctor partnership, with social media as intermediary. I've rolled up my shirt sleeves and am ready to get down to business!

Katherine

 

Picture of <span class="username">Guest (not verified)</span>

This article raises a very important issue about why patient communities are so important. When dealing with a serious condition, such as cancer, a patient can often choose different treatment paths. The doctors can give the latest data and studies - but patients want to to know what it's REALLY like to choose and live with certain decisions.

They can do this in patient communities. For example, at WhatNext.com, an online cancer community, we instantly match people to others with the same, specific diagnosis (breast cancer, stage 3, triple negative, recently diagnosed). Health care journalists can glean so much insight about experiences, thoughts and perspectives at WhatNext - and uncover many stories that need to be told.

Thank you Katherine for this wonderful article. You are very inspiring.

Karen Glowacki
WhatNext.com

Picture of <span class="username">Guest (not verified)</span>

Kudos to you, Katherine. I once had an editor who told me that the whole journalist-as-patient trope had been overdone and nobody wanted to hear about "poor me, I've had a health challenge." That's nonsense, of course. Journalists who have been patients add shading to their stories that the perpetually healthy never see. When you've had chemotherapy, you know how to count the halting steps to the mailbox. You know the terror of the "evaluating progress" visit. You measure little triumphs and big setbacks -- and you know others who do the same. It enriches your reporting.

Picture of <span class="username">Guest (not verified)</span>

[...] www.reportingonhealth.org - Today, 7:25 PM [...]

Picture of <span class="username">Guest (not verified)</span>

[...] www.reportingonhealth.org - Today, 7:26 PM [...]

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