It's hard to get people to listen... really listen... in the fight against ALS.
Scientists have a hard time listening to laypeople. The languages are different. The common ground is perceived as small. The researchers are busy.
Few physicians are as good at listening to patients and caregivers as they are at listening to heartbeats.
Even our ALS organizations often resist listening to diverse thoughts. Different ideas and perceptions can be difficult for organizations that have to sing for their supper with success stories.
Our FDA has recognized the problem and has started a process to listen to patients. That's a refreshing initiative, but it's still in the planning stages.
Over the last few months, some listening has started from what one might think is the least likely of listeners. It started with sharing a few tweets -- about clinical trials, about unmet medical needs, about the dearth of options for people with ALS, about the ticking ALS clock. On twitter, @alsadvocacy met @Lilly_COI and some common ground for listening emerged. An individual blogger/tweeter stumbled upon a major pharmaceutical company's open innovation team that was interested in listening and speeding up drug development. Amazing. It's especially amazing since Lilly has no drug candidate aimed at ALS. They were simply interested in listening and learning about a nasty unmet medical need that might help them improve innovation processes. This isn't about currying favor with a disease group that will turn into a drug market for them shortly. It's refreshingly altruistic.
I have corresponded and spoken with the Lilly COI team several times. They ask insightful questions and do a lot of listening. They have taken the initiative to meet some people with ALS and caregivers and researchers. They have done more listening and learning.
They have even asked an ALS caregiver to be a guest blogger on their website.
I hope that more in the pharmaceutical industry will be interested in listening, even if they are not involved with an ALS drug candidate. There is much to be learned from people dealing with this disease. Perhaps some ideas will be sparked that will improve drug development and trials for many unmet needs.
We also look forward to the FDA doing more listening directly with patients in 2013.
We hope that the fine art of listening will become contagious.