Not simply saying yes

At the same time I wrote the email in my previous post about directions in advocacy, I was asked by a company to write a post for their blog – a new initiative to help elevate patient stories.  While I was deeply flattered by the words of the person who reached out to me, I was troubled by the idea of simply saying yes.  In part because I think that patient advocates have gone too long doing many things for free and in part because of issues of independence and conflicts of interest.

I wrote back to the company and started a conversation with them about what it means when they ask someone to write for their blog.  I thought I’d share my email response here as again I think it speaks to issues many patient advocates face and one that needs to be addressed as the patient movement continues to mature.  There needs to be an industry standard for how to ask patients to contribute and what patients get in return for their involvement.  I think we need to be bluntly honest with those who ask us to contribute our stories and not agree to contributing simply because we are asked.

Here’s what I wrote:

Dear [Company Representative],

Thank you for reaching out and for the incredibly kind words.  It means quite a lot to hear this feedback.  Sometimes I think I’m writing into the void but it’s nice to know that it impacts someone.

I also love the idea of your initiative and getting stories out about the healthcare system of ours that is less a system and more chaos.  It’s great to see industry leaders spearhead initiatives like this in pursuit of change.  And even more important that you are recognizing that diverse voices and experiences need to be elevated.

I am conflicted a bit about writing for you all for several reasons but not completely averse to the idea.  The first thing I think about is this idea of patients offering their time and stories for free.  For the last 5 years I’ve seen this happen a lot where patients are so eager to help and want so badly to make change that they spend a lot of time and energy doing things for companies for free – whether it be blog posts or speaking at conferences or providing feedback on products.  I love the giving spirit of the patient community but it raises the ethical questions of whether or not it’s fair to use our stories for initiatives which will bring benefit (and perhaps profit) to companies with little return to the patient.

I think the standard is becoming that patients who go to events and contribute to feedback should get an honorarium.  For posts, they should be treated like freelance writers.  And I think this goes for all levels of experience.  I love the idea of contributing to these efforts but I also think it’s important to respect the patients by treating them like professionals hired in any other capacity to help a company.

I know personally I’ve contributed in the past to a lot of things for free.  In fact I spent all of 2012 running a chapter of Health 2.0 Austin for free, planning events, putting together a hack-a-thon, meeting with people all over the community while many of them ended up making money off of my efforts or at least getting connections to further their endeavors.  I’ve written 35 page reviews of a week and a half long hospital stay that was rife with medical errors giving feedback both professionally and personally that they would probably pay a consultant thousands of dollars to compile.  I’ve given product feedback in the past and shared my information and story for free for years all the while, I was still stealing food because I was so poor and spent almost a year homeless.  So it doesn’t seem quite right to be giving my services away for free with the stark reality that I live in poverty, even though I do really care and want to contribute to other initiatives.

And then my final quandary is around conflicts of interest.  There is a lot of discussion in the diabetic online community (DOC) about this very issue of advocates getting paid by industry.  In particular one of the big issues right now and one of the reasons I wrote about inclusiveness at these events is because there are advocates who get paid by pharma and medical device companies who end up in those policy rooms and are ostensibly advocating for all while at the same time clearly tied to the special interests that are raising insulin to unconscionable prices while people are dying and losing limbs.  This spurs not only an issue on who is included but as I briefly mentioned, when being paid – are we being bought by industry? or do we have independence? how do we disclose what we were paid and how we are tied to companies (I personally believe reporting should be along the lines of the lobbying industry and more recent practices with disclosures physicians make)?

All of this to say that I’m not saying no to writing anything, but I am saying that I can’t so easily say yes without further discussion.

I would love to hear your feedback on all of this as I think it’s a conversation that goes beyond you and I.

Thanks again for reaching out!




4 Responses to Not simply saying yes

  1. giftbearer says:

    Excellent points! Did they respond back?

    • Thanks for asking. Yes, the company did reply back and we are setting up a phone call to discuss what this means for their project and for patients who contribute. They were quite open to my thoughts and I felt they really took them to heart. I’m looking forward to talking with them more as well as to other advocates about how best to keep growing patient advocacy efforts.

  2. Night and /Day says:

    What is the goal? Are you going to write about your Diabulimia? They must know about your BPD and suicide attempts if they read your blog so that would be pretty amazing. It sounds pretty progressive.

    Did you see that Princesses Leia (Fisher) was cremated and buried in a prozac shaped container? Even after her death she kept on advocated to break the mental health stigma (at least around biological vs personality disorders)

    I wonder do they know you are disclosing their negotiations with them online? If not that seems like a pretty big boundary betrayal but they probably already know you have done that to healthcare providers in the past and are kewlo with social media and stuff.

    • Thank you for your feedback.

      The post they’ve asked me to write is about health policy actually. I believe most know about my mental health illnesses as I’m quite open about those but I’m mostly asked to wrote about health policy or broader patient advocacy issues right now. It would be great to write about mental health and I’ve contributed to some projects about mental health issues and my specific experiences in the past.

      I did enjoy hearing about Carry Fisher’s urn. She was a fierce mental health advocate. What a tragic loss.

      Please do realize that borderline personality disorder is in fact a “biologic” illness with great studies in neurology, chemistry, and genetics. It is not a behavioral disorder but one where the symptoms are often incorrectly labeled as such, which leads to great stigma. I encourage you to look up some of these studies so you might better understand BPD and stop your’s and other’s incorrect assumptions about this disease.

      As for blogging this email, yes I did give the company notice and I removed amy identifying information. It is not a “boundary violation” to share my thoughts on this subject as these are my words and my ideas. If any company wants to work with me on patient advocacy they must be aware that I value transparency.

      I haven’t “done that” to anyone in the past. If you are implying that it was disrespectful of me to post letters about my providers’ decisions and actions, I would counter that I call to account those who need to improve their “patient-centeredness” whether it be doctors, healthcare organizations, industry, or non-profits. Again, I value transparency and I think that being open about who is failing patients will (and have been) spurred go action only when publicly addressed. They are likely to ignore patient feedback otherwise. And in fact, some great discussions have come out of my brutal honesty.

      Thank you again.

      (Please excuse any typos as I’m on my phone and it’s weirdly autocorrecting left and right.)

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