• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Writing
    • greatest hits
    • beauty and wonder
    • demographics
    • featured commenters
    • health data
    • key people
    • peer-to-peer health care
    • positive patterns
    • public Q&A
    • trends & principles
  • Research
    • How Young People Use Digital Media to Manage Their Health
    • Digital Health Practices Among Teens and Young Adults: Key Findings
    • Fact sheet: teens and young adults, social media, online health resources
    • Fact sheet: differences between young women and young men in their use of social media, online health resources
    • Pew Research: Americans’ Data Worries
  • About me
    • Now
    • Curriculum vitae
  • Upcoming events

From stunt to solution

March 1, 2021 By Susannah Fox 2 Comments

From stunt to solution

I’m so nostalgic for breathing in other people’s ideas and aerosols that I’m re-reading notes from past meetings. Today’s inspiration: a March 2018 meeting convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research.

My notes:

Community biolabs, incubators, and accelerators are like ramps and bridges for citizens to gain access to existing research platforms.

How might this movement go from “stunt to solution”? (In my sketchbook I drew Evel Knievel jumping over a line of trucks vs. the national highway system in the U.S.)

Throughout the day I drew a series of peaks and valleys – positives and negatives in the landscape.

Here’s the list, starting with the positives:
– Organized patients and caregivers like #WeAreNotWaiting
– Guarded FDA support for open innovation
– Disintermediation of drug development tools
– Precision medicine and the idea that science IS action
– Undiagnosed Diseases Network has created turnkey web pages to help people find other patients
– NIH hosting testing and open data
– CRISPR
– Natural experiments in a rare population that are now tracked in a scientific manner
– Social media connecting scientists
– Right to try laws
– Infrastructure for engagement
– Patient advocates in powerful positions
– Building a pipeline for innovators
– Bringing together multiple domains of expertise: artists, scientists, need-knowers

Now the negative forces:
– Lack of a will to change practices among device and drug makers
– People who say that any super-rare finding is “not actionable”
– Pockets of people who remain offline, unconnected to the internet and other resources
– Limits of funding; high costs of clinical trials
– Regulatory challenges
– Payers who don’t grok the need for innovative devices

We worked under Chatham House Rules, but here are some unattributed quotes and ideas I wrote down:

If you give people a target, they’ll go out and collect arrows.

In a household with children, parents are the FDA, deciding what is safe to try.

Why haven’t pharmaceutical companies followed the path of the big movie studios who saw the promise of indie film and just co-opted those techniques and styles? Or big beer companies who acquire or create “craft” brews when it’s clear that there’s real money & interest in that market?

What if science & medicine became like the restaurant industry? Open source “recipes” and then differentiate on delivery and service?

DIY biolabs that adhere to biosafety level 1 standards are less dangerous than someone bringing raw meat into their home kitchen to cook. Let them innovate!

Hackers, artists, entrepreneurs, and people facing death are all willing (and likely) to change lanes, try anything. But most people are not. Should this change? How might we change it?

Biologists can learn from jewelry designers about how to create tiny, exquisitely fine-tuned devices.

Research-grade tools are no longer limited to university and corporate labs. The foldscope and paperfuge are two examples.

That blast of air that hits your face when a New York City subway goes by is a massive cloud of rat dander.

Innovation looks like a skunkworks. It’s unfinished and messy. We need to be comfortable with that.

We are in a bio-information space race. And China is way, way ahead.

If any of the above inspires a thought, please share it in the comments below!

Featured image: “Flying biker,” by Anthony Citrano on Flickr.

Share this:

  • Click to email a link to a friend (Opens in new window)
  • Click to print (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Filed Under: participatory research, policy issues Tagged With: Eleonore Pauwels, Todd Kuiken

Reader Interactions

Comments

  1. Lisa Suennen says

    March 1, 2021 at 10:33 am

    Hey S- it strikes me that this one has become partially true “What if science & medicine became like the restaurant industry? Open source “recipes” and then differentiate on delivery and service?” Not so much on the formulation side, but when it comes to certain drugs like birth control, viagra, etc, companies like HIMS/HERS, Roman, Nurx are distributing common drugs but wrapping digital and service around them. It’s not exactly open source, though that’s a great idea and should be used for all of the COVID vaccines, especially given government’s use of massive public funding for them.

    Reply
    • Susannah Fox says

      March 1, 2021 at 3:40 pm

      Thanks, Lisa! I love that perspective.

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Before Footer

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Recent Comments

  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37
  • Diane on A survey about clinical trial support groups: “I’d love to hear about clinical trials of the new weight-loss drugs believed to help people with diabetes and pre-diabetes” Mar 8, 12:15
  • Dave deBronkart on Lessons learned about hospice care: “I want to add some things I’ve learned in the years since you posted this. First, it should be noted…” Feb 20, 16:44

Footer

Follow me on Twitter

My Tweets

Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

popular posts

  • Hack needed: Tiny pills, trembling hands
  • Mystery solved. Again.
  • Conference organizers: Steal these ideas!
  • Artists of health care

Explore

Copyright Susannah Fox © 2023 · WordPress · Log in