I have had the opportunity to attend a lot of events as a
result of my blog. Many of these events
are hosted by pharmaceutical companies.
Even the most “patient friendly” or “patient focused” events aren’t
perfect.
I’ve had several experiences over the past year that have
left something to be desired.
Last summer, I was attending an event in Miami. The turnaround time was 36-hours. I knew this was crazy. But the reason I didn’t fight it was because the
one other time I asked if I could extend an offer an additional night due to
the quick turnaround time, I was very firmly rebuked – only to find out later
that other attendees had asked for the very same thing, and got it.
Back to Miami. The
hotel was absolutely massive. So when it
came time to meet the car to take me to the airport, I couldn’t find it
anywhere. I was so frazzled. A chronic friend of mine who was also
attending, got on the phone. It took us
almost 45 minutes to find the car.
Finally found the car. Got to the
airport. The gate was changed four
times, necessitating me having to run through the airport, and the flight was
ultimately cancelled. I spent six hours
waiting in line, only to have to get out of line when I was five people from
the front to make sure I caught the flight I booked on another airline while I
was standing in line.
All in all, the event was a disaster. When all was said and done, I was up for
almost 60 hours straight. I had to take
a day off of work to recuperate. This
experience still gives me nightmares.
I understand that event planning is difficult. And I’m sure that this is even more
complicated when you are working with chronically ill people. I also know that some of this was out of the
control of the event planners, but some of it was not.
Do
1. Include
chronically ill people in the planning of the event.
Nothing about us, without us, right? We know best what we need, so why not include
us in the planning? Why Miami at the end
of June? That heat and humidity really
isn’t conducive to having RA and being a functioning human. But they didn’t ask, so how would the event
organizers have known that? This might
not hold for events that cater to multiple illnesses, but for events that are
focused on one illness group, I think this is imperative.
2. Provide
a welcome or swag bag that includes snacks, but don’t provide too much stuff
that attendees will then have to figure out how to get it all home.
I love getting swag at conferences. Especially snacks that I can take on the
plane with me when I leave. But a huge
pet peeve is being given so much stuff that I don’t have room to pack it. I’ve learned to travel light, especially when
attending events that have a quick turnaround time, so I usually have very
limited space available for giveaways and the like.
3. Include
breaks, and let attendees know that it is okay to remove themselves to take breaks
if they need it, in addition to assigned break times.
You might not think you have to tell patients this, but I
always feel relieved when this is said out loud.
4. Have
the event and accommodations in the same location.
This makes it much easier for attendees so that they can go
back to their room and rest if they need to.
If you can’t hold the event and accommodations in the same location, provide
a “wellness room” or other place that attendees can go to relax, refresh, and
even nap.
Don’t:
1. Make
the turn-around time too short, and make travel arrangements that make sense
for the attendee.
It’s not as easy for chronically ill people to bounce back,
so it’s unrealistic to expect someone to spend such a short amount of time in
one place, and so much time traveling.
When most chronically ill people ask this, it isn’t because they’re
trying to take advantage. Additionally,
while assigning someone to the earliest flight out and latest flight back might
seem like doing someone a favor, this is not convenient for many chronically
ill people.
2. Have
the event at a venue that requires a lot of walking.
You don’t want to tire people out just from them walking
from their room to the part of the hotel where the event is being held.
3. Assume
that when the event is over, your commitment to the attendees is over, too.
While not everything that happened was the fault of the
pharmaceutical company, you can’t just fly someone out to a strange city, hold
an event, and then say goodbye, never to be seen or heard from again.
4. Treat
people differently.
You can’t say that one person can stay an extra night and
then tell someone else they can’t.
Obviously, I’m not referring to people that have specific dietary needs
and other things like that. But if one
person asks to stay an extra night because it’s difficult for them to travel,
and someone else asks the same, you can’t say “yes” to one and “no” to the
other. Plus, we know each other and we
talk, so there’s that.
With everything that happened after the event was
technically over, such as not being able to find the car and having my flight
canceled, I shouldn’t have been on my own at that point. There should have been someone I could have
contacted who could have helped me. It
didn’t help that by the time my flight was canceled, it was after 11 p.m. But still…
Ultimately, I did get reimbursed for the flight I purchased,
and the company got reimbursed for the flight I didn’t take, because I made
sure they did.
I left feeling like I might never attend an event run by
this particular pharmaceutical company again.
And that makes me sad. But I
can’t miss work to attend an event, only to miss more work because things went
so poorly that I need to recover from it.
It wasn’t an oh wow, my mind was
so blown that I need time to process kind of recovery. It was more of an I’m so stressed and my brain and body are so fried that I need rest kind
of recovery.
I never want to seem high maintenance, but if high
maintenance means looking out for myself and caring for myself, then I guess
that’s how it is going to be.
And I also don’t want to be seen as ungrateful, because I am
so honored and grateful for all of the opportunities I have been given. But, and this is a big but, events that go
the way this one did suggest that this company doesn’t know how to work with
chronically ill people, or hasn’t sought input from chronically ill people
about how an event that includes them should be run.
I’ve also had a few more recent experiences that have left
something to be desired.
1. In
one instance, I had one screening call for a pharma advisory board. Then there was a second call, which because
of the time options, I had to take in my car during my lunch hour. I didn’t make a big deal about that since it
was a relatively short call. A third
call was scheduled, but all time options during the day, and for a significant
chunk of time. Even though they are
paying for this third call, like I said, it’s during my workday. I emailed the organizers to point out that
all of the options were during the workday.
So what am I to take this to mean?
Because I’m chronically ill, I shouldn’t work? Or that opportunities that come around here
and there should take precedence to my full-time day job that is consistent? I have struggled with having to say no to
things, but this circumstance is really forcing my hand. The big problem is that I have to take unpaid
time for this – even though the call is paid – because I have no paid time off
left because I’ve exhausted it going to doctors’ appointments.
2. In
another instance, I was asked to be part of another group. I jumped at the chance. I didn’t hear anything finalized, so the week
the event was supposed to take place, I reached out to find out if it was
happening, and was told that it wasn’t.
I was then asked which of two dates would work for me. At the time, I said they both did. Again, several weeks went by and I didn’t
hear anything. Because I’ve been dealing
with some health issues, I ended up having to schedule an appointment for one
of the dates, so I emailed letting them know that I would only be available the
one date. I then received an email that
they had finally decided on a date, and it wasn’t the one that I could attend. So thanks for playing. While I don’t expect events to be rescheduled
because of me, I don’t appreciate the lack of care for my schedule. No one reached out to say the originally
scheduled call wouldn’t be happening until I asked.
Does any of this sound patient-friendly or
patient-centered? Not to me. Being patient-centered means more than
bringing patients to the table once a year.
It means more than throwing money at patients, but treating them like
crap. It means really understanding what
patients go through and experience, and the struggles that we face.
Call it FOMO (fear of missing out), but I have to call out a
bad opportunity when I see one.
And here’s a really, really important tip:
Don’t treat people who are going to blog about you like
crap.
I’m not going to lie.
I hold organizations and companies that work with patients to higher
standards of how they treat patients.
And unfortunately, a lot of times, they fall short of the mark.
I had originally written this post for another site that I
blogged for, but they didn’t post it because they didn’t want to damage their relationships
(read money) with big pharma. And then
they told me I couldn’t write for them anymore.
Mike drop.
Leslie out.
(So I’ve really struggled about whether to add to this post
and share it, but because there continues to be a glaring lack of “getting it”
that I just can’t handle anymore, I felt like it needed to be said. I hope that people will read this and take it
turn out. Patients want to help. I want to help. But I can’t help at the expense of
myself. So please, let myself and other
patients be part of the solution. Let us
help pharma. Helping pharma starts with
including patients in a meaningful way.)
