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Guest Blog: #hcsm and a Prescription for the Health Care Industry

Today I am very proud to be hosting a guest post from Dana LewisDana Lewis is an interactive marketing specialist at a non-profit health system serving the Greater Seattle area. However, her tweets and thoughts (ranging from #hcsm to gluten-free cupcakes and elephants for BSparl) are always her own. She has had type 1 diabetes for eight years, celiac disease for two years, and is a fierce advocate for the idea that people with chronic illnesses are people first - and that no one deserves to be labeled by a disease.

Dana created the #hcsm chats on Twitter back in January 2009, and the online discussion has engaged and inspired hundreds of patients, doctors, and health care professionals alike.  She's offered to share a little bit of her story, and I'm looking forward to seeing how far her passion for #hcsm takes her!

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Dana Lewis:  BSparl's favorite long-distance baby sitter.  :)It's hard to understand the power of health care in social media until you experience it first hand. For those of us with chronic illnesses, it's a no-brainer to seek and find support from individuals (and groups) online. But two years ago, the concept of using social media for any purpose in health care beyond patient to patient support was foreign to the greater health care industry.

I'm obviously biased, but I believe the creation of the weekly #hcsm (health communications & social media) chats online played a role in helping social media become more adopted in the health care world.

#hcsm was the first regular health care hashtag and chat, which quickly evolved into a well-established community. Although I'm not a blogger, I am an avid lurker in the DOC and often experience the numerous and varied benefits of health care & social media first hand. As I began working in health communications, it seemed natural to explore social media further to learn from others established in the field. Thus, #hcsm was born simply out of a desire to have an ongoing conversation about social media in health care.

Fast forward to today - #hcsm is a growing, vibrant community with global health care impact. #hcsm has several "sister" chats in Europe, Asia, Australia/New Zealand, Latin America, and more. Social media in health care is becoming mainstream, or at the very least explored regularly, around the world.

However, the principle of #hcsm is removing the barriers so that students and established professionals can all learn from one another; so that doctors and patients can understand each others' motivations and obstacles to communication; and so that in the end, we're making a difference in health care.

While social media in health care has come along way, there are still basic elements of health communication that need to be fixed. My blanket, non-medical prescription for anyone, whether they are a doctor or patient, includes:

1. Do not label any individual or group by their disease. Call yourself what you will, but don't force a label upon another individual. We don't accept labeling in our society by gender, age, race, or ethnicity - why should we allow discrimination by disease?

2. Realize that not all patients are the same - each have different motivations, and each have a different health care (and life) experience. People don't (usually) choose to be "sick" or "ill"; we didn't ask for type 1 diabetes - we just happen to have it. Regardless, we're people first and patients second.

If you could add an item to this prescription list for the health care world (after a cure for diabetes & other diseases), what would it be?

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Thanks for posting, Dana!  (And BSparl says thank you for all of the elephant fun treats!  We are working on animal sounds and so far we have "meow" for kitty and "pffffft" for elephant. /sidenote)

Comments

Along with the "every patient is unique" point, every person's approach to SM is unique. Some people choose to blog, others stay on just Facebook or Twitter etc.

Lucky for us, there are many options out there. One avenue shouldn't be put on a pedestal just as someone shouldn't be dismissed for not using a particular medium.

...but that wont stop people like me from trying to get Dana to blog regularly ;) Guest posts are only the beginning! [evil laugh]

We don't label people by gender, age, race or ethnicity?????
It is a totally nonoffensive statement to say, "That is a boy." Which is labeling both age and gender. It might offend some if I said "That is a Jamaican boy," but probably not.

One of the greatest arguments for me against person first language is that it often is unwieldy and brings attention to itself. If I thought I had to describe you as a person with femininity, not only is that bringing attention to my need to remember that you are a person (which should not be that hard), it is implying that your femininity isn't an integral part of you, important as it is, and that it makes me struggle to remember that you are a person.

I am a diabetic. In the right context, I am a person with diabetes. But if my being a diabetic makes people forget my humanity- then no words will ever be enough to bridge the gulf between us.

Holy crap. Dana Lewis on a BLOG post?

Somebody pinch me...

Well said, Chris.

Dana,
I have great hopes for health care thanks to the work and outreach of #hcsm. Thanks for all the great things you've done and are continuing to do!

Jody

@Chris - not only did I blog, but I'm also leaving a comment ;). And very well said re: not putting a platform on a pedestal!

@Jonah - interesting point and great perspective. My point is that everyone sees it differently, and we should respect everyone's preferences when we can. Usually I see people being labeled by a disease and their humanity ignored, which is why I urge folks to respect and focus on people first.

@Scott & Dr. A - thanks :)

Kerri -
I really wish I weren't covered in hives right now looking like a monster and stricken with the plague because if I weren't all those things right now, I would TOTALLY post a youtube video for you of me doing the elephant noise... my dad taught me when I was little,and I have now even surpassed his elephant trumpeting abilities... Maybe once I'm feeling a little less gross I'll do that for you and little Birdie... although... being all gross and sick right now would be a good excuse for me looking horrible on my web-cam... hmm...

It's true. I had to come read with my own eyes. OMG! Yay! Kerri, maybe you can have Bsparl talk Dana into blogging more often:)

Way to go! There is nothing wrong for those who suffer from any chronic illness may seek help from anyone (even groups) in the internet. They might feel something pitiful in case we need help to cure any disease that is too difficult to battle. We should be thankful for this.

I work and represent frail seniors and I could not agree more. Each person I work with is not a disease or person in Room 106. They are diverse as a bouquet and individuals each with a wealth of living experiences who happen to have become frail due to illness or age related changes. What we need are compassionate physicians and health professionals that see the Life Story of the person first and help them with their fraility and disease. As I age myself I can see me in this situation and all I want is for someone to see me, not my disease only.

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