Danielle Boyce

Data scientist/Drug Repurposing, Neurodegen + Epilepsy + ID + Oncology//art lover//patient advocate//mom of 4 / Views strictly my own.

[Danielle Boyce @DataSciDanielle]

@PeterODonneII Oh bummer! I will be there for the International League Against Epilepsy meeting!

[Danielle Boyce @DataSciDanielle]

@PeterODonneII I will be there in a few weeks!

[Danielle Boyce @DataSciDanielle]

@nadia_sethi @alsadvocacy @KickALS Deal!

[Danielle Boyce @DataSciDanielle]

@sophiazilber Also, this Patient-led Research Scorecard we discussed a few weeks ago! https://t.co/5CT8yKKSvT

[Danielle Boyce @DataSciDanielle]

@sophiazilber One very good rubric is the Morris Principles. https://t.co/t5q9NhDJXN

[Danielle Boyce @DataSciDanielle]

@alsadvocacy True, but it might not be healthy to devote your career to such groups.

[Danielle Boyce @DataSciDanielle]

@sophiazilber @alsadvocacy This was not patient advocacy. Journal editors representing a larger society, for example.

[Danielle Boyce @DataSciDanielle]

@alsadvocacy Completely agree. Even my own personal voice has changed over the years.

[Danielle Boyce @DataSciDanielle]

@alsadvocacy Now other leaders are falling all over themselves to say "that person doesn't represent us." "It's just one person. The rest of the community doesn't feel that way." Well, for whatever reason you let that person be in a position to represent you knowing he was like that.

[Danielle Boyce @DataSciDanielle]

https://t.co/WEK8AhiJvE

[Danielle Boyce @DataSciDanielle]

@nadia_sethi @RarePOV @gwenpetersen7 @rarelikeher @alscureproject @CheckOrphan Excellent point. I am a much better colleague, advocate, and researcher because I interacted with people from academia, industry, and government early on at the conferences.

[Danielle Boyce @DataSciDanielle]

@RarePOV @gwenpetersen7 @nadia_sethi @rarelikeher @alscureproject @CheckOrphan Also just plain bad business because even passing conversations with people with lived experience can result in dramatically improved research.

[Danielle Boyce @DataSciDanielle]

@Jeanc9orf72 @alsadvocacy @gwenpetersen7 @nadia_sethi @RarePOV @rarelikeher @alscureproject @CheckOrphan In epilepsy it's very open to advocates (although usually not free). Most don't/can't attend, but those of us who do are often treated like guests of honor. We have made incredibly fast research progress in the last decade doing it this way.

[Danielle Boyce @DataSciDanielle]

@gwenpetersen7 @nadia_sethi @RarePOV @rarelikeher @alscureproject @CheckOrphan Some conferences have a reduced rate for advocates. I have seen folks do a GoFundMe or ask businesses to sponsor them. 2/2

[Danielle Boyce @DataSciDanielle]

@gwenpetersen7 @nadia_sethi @RarePOV @rarelikeher @alscureproject @CheckOrphan Aside from reimbursement from my job in academia, as an advocate I have received funding from industry partners (e.g. I was the advisor on their project so they sponsored my attendance) and from nonprofits I worked with (so I can mind their table in the exhibit hall). 1/2

[Danielle Boyce @DataSciDanielle]

And here is the survey codebook: https://t.co/F4PVUEuXjH

[Danielle Boyce @DataSciDanielle]

For those of you working on survey development for longitudinal studies, I think this is a helpful framework used by the All of Us study: https://t.co/ppuw5gB6xA

[Danielle Boyce @DataSciDanielle]

@md_wallach Hysteroscopy with endometrial biopsy in the office was more excruciating than childbirth.

[Danielle Boyce @DataSciDanielle]

If, for some reason, you need to communicate with, I don't know, a certain regulatory body, about what's wrong with the ALSFRS-R, here's a little open-access paper that you can drop in your comment: https://t.co/LfCNX5xJ3M