I had to give my baby to strangers when he was two days old, signing papers to waive liability if something happened to him when he was under the care of someone I had never even met. This is the story of most chronic illness caregivers. As time goes on, our comfort level grows, relationships build with our doctors and care teams. But with chronic illness, or CF, anyway, in our case, there is always something new, always something scary, always something we don't understand. Then researchers come in - knocking on the door after a long 3 hr appointment, or while we are in the surgery holding area waiting to go back and wondering how the results of whatever we're having done will forever change our reality, yet holding it together for our kid who is equally scared - trying to explain what the researcher whose interested in a sample of our tissue or some of our thoughts (neither of which we're giving with a clear mind) is trying to do, what they're hoping to learn. But in that instant it sounds promising so we go with it, signing their paper since the risks seem low, collecting our gift card for participation, or just their thanks, in many cases, and the promise of learning or better connection with our care team, whatever it is that their trying to do. Hope is really what their offering us, and we sign up.
Sometimes there's further interaction, but many times not. Then months later, long after we've signed their papers, something hits us and we remember that time we signed up for that thing, and a bit of us wonders what ever came of it. And, if we search just a little bit, we find out that the study didn't recruit, or that it didn't meet the appropriate end points, or that the institution supporting it didn't see the value in it and it's done. Those researchers move on to their next theory to test and our contribution has been tossed aside. Or maybe it went on and that researcher learned many great things that they wrote about and got credit for and published their findings in some fancy journal that we don't have access to because, after all, we're just the patient. Forget about what the patient thought, what they learned, that brief glimmer of hope.
It feels abusive, really, to approach the sick and offer them hope - to take something from them, physical or otherwise, something that's so sacred - and then to just end it because it didn't meet your goals. When do my goals matter?
Why are we allowed to just throw that all away? Why is that ok? Shouldn't there be, if nothing else, a moral or ethical obligation to say, "I'm sorry, I tried." Shouldn't we be giving patients the opportunity to take what's been learned from the work they contributed to - the work that couldn't have been done without them - and start from a new baseline of learning? Why aren't we sharing what we are learning in research, successful or failed, in a way that allows folks to build upon it? This is among the greatest failures of modern medicine.
I want to ask researchers what they're actually trying to do. If the answer isn't that you are trying to, wholeheartedly, help patients, then please stop wasting our time.
A research project I had been a part of recently shut down and I'm so...I guess sad is the right word. I wasn't a participant, but rather a member of the study team so I can't help but feel a bit of responsibility. My frustrations are for those families who joined this project, sharing with us their precious time, the intimate details of their health and lives. People who were given hope only to be shown another dead end, and for no good reason. My participation and contributions felt uncomfortable at times. It was frustrating to have my ideas and suggestions for a more patient-centric approach limited by both institutional research regulations, and the discomfort or fear or I'm not exactly sure what of trying to do something different than it had ever been done previously. I should have pushed harder.
Helping patients means doing things differently than they're being done right now. I do believe researchers are trying to learn, to help us. But to be honest, it's moving at a devastatingly slow pace and it's too often letting us down.
Give me back what you've taken from me and encourage me to share it, to build upon it, to figure out what else we can learn together. My participation in research and the view I have of the participation of my peers has left me feeling exposed and uncomfortable, not wanting to say yes to future engagement. This is a problem that we need to fix! This is how we will really start to learn and grow and change and improve. Stop picking on the weaker man.