Just Where Is that Privacy Line?

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This week we were contacted by two major TV news outlets requesting interviews with advocates – one a national broadcast outlet, the other in Chicago. As we do when we receive these requests, we immediately alerted those Premium members who are on our Opportunities & Alerts notification lists so they could respond if they fit the profiles. In both cases, the media were looking to talk to APHA members – and even more so, client-patients of our members.

These requests came on the heels of a post in the APHA Discussion Forum expressing concern over problems that could be caused by having a Facebook page. The poster was worried that if a patient asked a personal health question on the advocate’s Facebook page, it would cause a HIPAA privacy violation, and she didn’t want to run that risk.

Then came an email question from a member: how can we, as advocates, claim we value client privacy, then turn around and expose them to the media? Of course, the underlying point to the question is about exposure for our own advantage, to promote our advocacy work.

Two great questions! And inspiration for today’s blog post.

The answers aren’t difficult to understand, but there are a few moving parts, as follows:

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Surprising Wisdom from Chipotle Will Make Your Day

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About once every five or six weeks I splurge on Chipotle for lunch. Love it – guacamole and all (Have you tried their corn salsa? Yum.)

On my most recent visit, I did something I had never taken the time to do.  I read the take-out bag. That’s right. If you have never purchased take-out at Chipotle, you may not know that there is a great deal of what looks like plain old text on the bag. I had never paused to read it, assuming (uh-huh) that all that text was just promotional in nature – and who has time for that?

But I was so wrong! 

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Remembering the Mean Girls

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In Fall 2010, about 150 health advocates, many of whom were just considering entering the profession, convened in Washington DC for the Second Annual NAHAC Conference. I was there at the invitation of NAHAC, to both be a vendor, and to give a presentation about marketing for advocates. The conference was a resounding success in my estimation, using my two conference-success measuring sticks: 1. I met so many smart, wonderful, passionate people and 2. I learned so much more than I imparted.

But there was one aspect to the conference that left a bad taste in my mouth, marring the experiences of too many, and lighting a fire under me.

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Health Advocacy Ethics – Conflict of Interest? Or Important Service?

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elderlywomanA recent conversation with a handful of knowledgeable people, people I respect a great deal, yielded two different outcomes – either a loud “yes, of course!!” or a loud “no, no way!” So I want to know what YOU think. As a prelude to the story – the question I will ask you at the end is:

Should Gwen become Mrs. Smith’s healthcare proxy? Can she ETHICALLY make that shift? (We are not asking a legal question here – only a question of ethics.)

Mrs. Smith is 90 years old and until recently was quite healthy.  She is alone; her husband died many years ago, and they never had any children. She has a few nieces and nephews, but hasn’t seen or heard from any of them in years.  She lives in the country and has no neighbors nearby.  Even her close friends from church have all passed away. Gwen has been Mrs. Smith’s health advocate for several years now, accompanying Mrs. Smith to doctor’s appointments, lab tests, and whatever was needed for her care. About three years ago, Mrs. Smith was hospitalized for a brief time;  Gwen sat by her bedside and was a liaison between the hospital staff and Gwen for the duration. Over these years they have become very close. Mrs. Smith trusts and values Gwen’s opinions more than anyone else on earth and thinks of her almost as the daughter she never had. Now Mrs. Smith has asked Gwen to help her make the healthcare decisions that she will designate in her advance directives.  Included is a request to Gwen to become her proxy – that is, the person who will, if Mrs. Smith becomes incapacitated, make any decisions that regard end-of-life care on Mrs. Smith’s behalf. (“Proxy” is one term used – others could be agent, representative or power of attorney.) Continue Reading →


Turning Adversity into Proactive Survivorship

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upsetwomanIt’s been a tough week. From the initial blow, I’ve been a poster child for Kubler Ross’s five stages of grief. At this point I’m probably mid-way between depression and acceptance.

If you are a subscriber to my patient empowerment newsletter (not our APHA Monday Mail, rather, my Every Patient’s Advocate one) – then you have already heard my news – I sent out a heads up last Thursday just before my About.com newsletter went out. (If you aren’t a subscriber, why not? 😉 Here’s a link. )

The news is that after almost 7 years and 2000+ articles, out of the blue, with no warning, I was terminated from About.com. The only reason given was that it was a “business decision.” I’ve had my say on that at my personal blog.  You can find details here if you’re curious.

To say I was stunned is a major understatement. Shocked, upset, angry, frustrated – that’s a start. It’s a blow to my ego, a hit to my income, and a blindside to those people for whom I have written, and provided advice and resources for all these years. The feelings have been very similar to those I felt when I was diagnosed with cancer.

Ironically, it happened on June 30 which was 10 years to the day my cancer misdiagnosis journey began – the journey that set me on the path to patient empowerment, later advocacy, working and interfacing with all of you.

That journey has made me a proactive survivor.

What? You’ve never heard of a proactive survivor?

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