When we launched our Facebook Live “Ask the Expert” series earlier this year we wanted to create an opportunity for people to hear from and question experts about specific diseases or disorders. The experts we turned to were medical ones, neurologists and neuroscientists in the case of the first two Facebook Live events, stroke and ALS.
Then we learned about a blog post on the ALS Advocacy website questioning our use of the word “expert”. The author, Cathy Collet, points out that doctors or scientists are far from the only experts about these conditions, that there are many people who, by necessity, have become experts on a lot of issues relating to ALS and any other disease.
Here’s Cathy’s blog. After you read it please let us know what you think: should we come up with a different title for the series, if so what would you suggest?
“Over the years I’ve experienced many “Ask the Experts” sessions related to ALS. It’s always a panel of neuroscientists who talk a lot about ALS research and then take a few questions.
The “Expert” crown defaults to them. They speak from the dais. We get to listen a lot and ask. They are by default “The Experts” in the fight against ALS.
But wait, there are all kinds of people with superb and valuable knowledge related to ALS –
- There are people who know a lot about insurance.
- There are people who know a lot about communication technology.
- There are people who know a lot about low-tech hacks.
- There are people who know a lot about suction machines.
- There are people who know a lot about breathing.
- There are people who know a lot about the FDA.
- There are people who know a lot about moving a person on and off a commode.
- There are people who know a lot about taxes.
- There are people who know a lot about drugs.
- There are people who know a lot about data.
- There are people who know a lot about choking.
- There are people who know a lot about financing research.
- There are people who know a lot about stem cells.
- There are people who know a lot about feeding tubes and nutrition.
- There are people who know a lot about what’s important in living with the beast ALS.
- There are people who know a lot about primary care in ALS.
- There are people who know a lot about constipation.
Our default implication for the word experts being neuroscientists is revealing. There are many people in the fight against ALS, including those living with it, who know a lot. We still live in a hierarchy where people with ALS and caregivers are at the bottom.
Words matter. “Expert” is not a royal title to be owned by anyone by default.
It’s time for simple changes to some traditions. “Ask the Neuroscientists,” anyone?
By the way, our next Facebook Live “Ask the ?” feature is targeting Sickle Cell Disease. It will be from noon till 1pm on Tuesday August 28th. More details, and maybe even a new name, to follow.
The Stem Cellar 
I totally agree with Cathy Collet. I am both a PhD Scientist and the mother of a child who died of cancer. There are many aspects of being a patient or a caretaker where researchers have no expertise. You should rename your Facebook Live events “Ask the Stem Cell Scientist”.
Ms. ColIet is exactly correct!! I think CIRM has answered their own question. Rename your various series “Ask the ?” It will oeak interest. Provide an intro as to the credentials of who will be speaking on a specific subject.
Too often people are failed by thinking “experts” know best, that “experts” have an individual’s interest as primary concern, that an “expert” has al the answers, that only the “expert” knows best.
Hi Kevin,
Ms. Collett has an excellent point and yes, patients are arguably the most experienced “expert” with the conditions they live with. Caretakers are probably next in line experts in their own right, scientists experts in research, and on and on. As such, I think it’s a good idea to focus attention on the expert who’s speaking. I was always thinking these sessions were “Ask the Scientist” sessions, and have had them marked on my calendar as such. The intent I thought was to educate the ambassadors with what the scientists were working on. Thus, I always thought it was appropriate that research scientists addressed these meetings. I’m not sure how it became “ask the expert,” and possibly it was an interpretive mistake. If the intent is broader, i.e. if we want to educate the researchers on what the patient’s are experiencing, then it would be appropriate to turn the tables so to speak. If the intent is to educate the patient on navigating insurance issues, we would need to set the speakers to encourage dialogue between insurance experts and patients/ caregivers. Of course, the audiences will be different for each of these topics, but it would certainly help to educate.
If it’s desired to cover more topics than those addressed by research scientists, possibly the topics can be collectively addressed by example:
Today’s Topic: ALS – Scientists Research
ALS – Caregiver Tips
ALS – Insurance Matters
ALS – Patient’s / Advocates Voice
ALS – Treatments / Access / Affordability (Hosted by a Panel of Experts consisting of doctors, insurance companies, pharmacy reps)
Sickle Cell- Scientists Research
Sickle Cell- Caregiver tips
Etc.
Best Regards,
James