1. Include chronically ill people in the planning of the event.
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.
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.
4. Have the event and accommodations in the same location.
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.
(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.)