Who Is Included?

I can’t count the number of times the topic of who is and should be included in policy discussions and conferences comes up.  Just this week I encountered two examples where patients though ostensibly “included” were not included really at all.  Considering how long this has been an issue and how often it is discussed in patient communities, I am still disappointed that the discussion continues and inclusivity has not really expanded to mean all patients included.

About a week ago, another one of these conversations came up about who should be in the room when certain diabetes organizations were discussing the affordability of insulin, as prices skyrocket.  According to Diabetes Mine:

On Nov. 11 in Washington, DC, the National Diabetes Volunteer Leadership Council (NDVLC) convened what it called the inaugural Access to Insulin Roundtable, bringing together about two dozen diabetes advocates and advocacy groups, as well as execs from all three Big Insulin companies, Eli Lilly, Novo Nordisk, and Sanofi. This has been a long time in the works, and getting all these people around the same table is an incredible undertaking!

I didn’t hear about the meeting until I saw a tweet of it on November 29, 2016.

I then entered into a discussion about what it meant to really represent people who have issues affording medicine and inherent conflicts of interests of the people in that room – including the fact that most of the diabetes organizations are in bed with big PhRMA.  My point being that unless you are in or have experienced poverty, you cannot necessarily speak to the problem of access for those individuals who are – the same holds true for minorities or other classes of individuals who face unique challenges in the healthcare system.  That to truly have a meaningful discussion, there need to be a diverse set of individuals at the table and that those individuals are not getting to the table at all.

Upon seeing these tweets, another diabetic emailed me saying she didn’t feel represented by diabetes organizations and she is “tired of the same ‘advocates’ who keep repeating the same ‘rhetoric.'” She went on to say:

I have a refrigerator and I have insulin but I live in 3 month increments wondering what will might happen when I go to the endo (next week) and the pharmacy (January).    I wish YOU could go to these meetings and advocate/represent us in addition to the usual people who seem to always be the “influencers”.

I really appreciate her compliment.  I like knowing that people think that someone hears their voices and can bring them forward.  But I don’t actually think I should be the one in all the policy discussions or conferences (though I do want to be there, I do want to give a voice to my experiences).  I  sincerely think SHE should be there.

The problem has been rehashed over and over, patients have yelled far and wide that they want to be included but issues of money, travel, time off work, health all impede their ability to attend these meetings and events.  And quite honestly they aren’t even always asked or know they can and would be accepted to talk.

I’d say the biggest barrier right now is money.  I myself was just accepted to a conference to speak on medical education and then was told if I wanted to present I have to pay a registration fee of $649 (I get a discount of $50 for being a presenter).  Six hundred and forty nine dollars.  I can’t even begin to fathom that amount of disposable income when I still only get $890/month in disability and $93/month in food stamps.  I know some patients have gone the route of kickstartr campaigns to raise funds but seeing as I still need help paying my rent, I feel asking for finds to go to a conference doesn’t make sense.  And that’s just the conference registration fee.  That says nothing of the plane ticket, shuttle to and from the airport, food while traveling, hotel, and other incidentals.  That’s too high a hurdle for me to pay to present and there’s no possible way I’d consider paying it just to attend.

Though this conference specifically talks about “everyone included” it seems that only rich patients who can take time off work and are healthy enough to travel are actually included.

The same has happened at a number of initiatives that tout their “inclusivity.” Three and a half years ago, I wrote how the Patient Centered Outcomes Research Institute (PCORI) was not very patient-centered at all and all the barriers that existed to get to the event and participate.  I wrote to Stanford Medicine X that they weren’t including poor people on their “Serving the Underserved”/”No Smartphone Patient” panel(s).  And while I was honored that it inspired them to include patients, including a 3 minute version of parts of my letter, I feel like the point was missed.  I wrote the letter to say that we need to invite more voices to the table, but I felt only mine was added which wasn’t nearly representative of more diverse patient experiences.

I hear it time and time again from patients who can only watch the twitter stream of conferences around the world that nominally say they want to work with patients, are patient-centered, include patients, etc.  But the truth is, none of them do – or at least none of them make a concerted effort to include all patients.

I’ve heard very few suggestions on how to remedy this.  One that comes up often is sponsorship by another company.  The problem with this is an inherent conflict of interest – would the patient be required to speak highly of their sponsor? Would they get to maintain their objectivity if they want to write a blog post or live tweet the event? Will they be censored?  I think maybe with a good contract in place, some of these conflicts might be lessened but they could never fully be erased.

And even if there are sponsors, which patients will they choose to sponsor?  Would it be the same people that go to these events already and with whom they have established relationships?  Do the sponsors look for diverse voices to bring to conferences?  How do they tell people that these conferences exist?  What would be the sponsor’s responsibility in ensuring that all patients are included?

The same applies for consulting gigs or policy discussions/”roundtables.”  How do we get patients there? Who pays? And who facilitates it all – because it’s not easy to get to any of these events, add chronic conditions and special needs and accommodations, and it’s infinitely harder.  And even if the registration fees are paid, patients are still doing this virtually for free if not taking time off work and losing income too.

In the end, I wrote back to this epatient, saying:

Actually YOU are the person who should be in that room.  That’s my whole point.  It should be the people who never get to be in those rooms/discussions.  Real people who have real issues.  It shouldn’t be me at all.  It should be you and the people at my free clinic downtown and all the people who feel like they shouldn’t be there.  Because those are the people who know the most, have a wealth of information that gets skipped every time.  The people who think they wouldn’t have anything to say have more to say than anyone else in that room.

The problem is, they don’t encourage others to attend or make it accessible or make it inviting.  So either people don’t know it’s going on, they can’t get there (travel, money, time off work, special accommodations, etc.), or feel they wouldn’t have anything meaningful to say or are afraid to talk.  That’s what frustrates me.  I’m vocal but I don’t want to be the representative. I can’t represent everyone.  I can’t represent even you all that well because I don’t know the issues you’ve had with your eyes or how you’ve even see access change over decades as a diabetic [I’ve only been Type 1 for 14 years).  Just like I can’t represent people of color or people who live in rural areas or people who have limited education or speak a language other than English as a first language.  I can’t speak for someone who’s been pregnant or who is a single parent.  I can’t speak someone working 2 minimum wage jobs and yet can’t make ends meet.  They need to share their experiences.  I can tell my experiences but mine don’t come close to representing everything that’s going on in the world.

I try to relay messages that people tell me, like yours, but I want the people who actually experience them to be able to share them.

Things need to change.  We need to invite more people in.

Right now, too many people don’t feel included.  They don’t feel heard or represented or even part of the discussions. Honestly, it’s a true waste that they aren’t heard or represented or part of the discussions because we are missing out on so much without them.

Many things need to change if conferences and policy discussions want to be inclusive.  And only by be being more inclusive will robust discussions and more meaningful change in health care occur.

I don’t know if I’ll be able to go to this conference that I was just accepted to.  I desperately want to – I feel I have something meaningful to say to doctors and that it could have a great impact at a medical education conference.  But right now the barrier is too high for me.  And if it’s too high for me, it’s too high for too many.

*Update 12/12/16: Hours after posting this and after discussions online with the organizers of the conference which would cost me $649 to attend, they were able to ensure that each patient is given a scholarship to cover registration.  I was very pleased to see this, though honestly still a bit sad it had been so difficult to achieve and only happened because of public discussion.  I know there are good people at these conferences who do want to help patients attend and have their voices heard and these actions proved that to be true.  I hope this will become a standard for conferences accepting patients and not the exception.

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2 Responses to Who Is Included?

  1. Andrew Spong says:

    Hi Erin. Thanks for this. I know you’re referencing a PCORI meeting from several years ago, but you may be interested to learn that PCORI self-accredited as a Patients Included event for 2016 (I believe they also did this in 2015 as a non-PI event), which meant they were mandated to provide some patient scholarships covering ‘the costs of travel, hotel, registration, as well as an allowance for transportation, baggage costs, and meals not provided during the meeting’.

    See clause three here:
    http://www.pcori.org/sites/default/files/PCORI-Annual-Meeting-2016-Patient-Included-Requirements.pdf

    Application details and link here:
    http://www.cvent.com/events/2016-pcori-annual-meeting/custom-36-93e8e6737e104ec8932fdac8877f1cd5.aspx

    Let’s hope this sets a precedent for 2017, and I hope to see you reporting from PCORI next year as a patient scholar, or patient faculty (NB the same pre-payment of T&E in full is required for patient faculty at officially accredited Patients Included events).

    Regards

    Andrew

    • Thanks for this information.

      Unfortunately after I posted in 2013, I was effectively ex-communicated from PCORI and they have refused to acknowledge me. They were not receptive of feedback and I think offended that anyone would openly critique them.

      I think it’s also important to note that it’s not just about the scholarship. It’s my fault for not making this clearer above but issues of accessibility also arise in these meetings/conferences – something that PCORI completely failed at when I was there. Medicine X actually sets the standard there, making sure that everything they do is patient-centered including meals and a place for patients (and attendees) to rest and take care of their medical needs.

      I do hope at some point that PCORI will reach back out to me as I’d love to see the changes they’ve made and be a part of the process.

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