• 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

Medicine’s cultural “caution tape”

November 6, 2017 By Susannah Fox Leave a Comment

Medicine’s cultural “caution tape”

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.

Jack Penner Jack Penner, in response to “His doctors were stumped. Then he took over” (2017):

In terms of how can we empower patient to become active participants, one thing that comes to mind is lowering both the perceived and the actual barrier to entry.

Medicine as a field, medical devices, and medical therapies, have developed a cultural “caution tape” that says you have to have certain amount of letters after your name to get involved. The maker movement is breaking down these walls, as you’ve shown me, and these success stories need to continue to spread.

Building communities of patients and loved ones who are diving into participatory medicine can help open doors for others, provided those affected can find and interact with these communities. Adding physicians to these groups to help join the dialogue, along with the biomedical engineers, and the other stakeholders, to engage WITH the patients, families, and caregivers, rather than in parallel with them (as I see is happening frequently within medicine as we silo ourselves amongst other “professionals”) can only help.

Those ideas sum up into:

  1. Lower the barrier of entry and add community, social support, and opportunities for idea-exchange to build and spread these pockets of rare diseases
  2. Bring “professionals” into conversations with the patients to help all the stakeholders collaborate.

When we can give patients the chances to speak and also be heard by those also have the resources to turn these ideas and conversations into action, we can perhaps help patients not feel like their efforts to engage are futile.

In terms of the different models, I agree with you that they all have their place. The advantages of the mom and pop style non profits are that they have their ear to the ground with their own experiences and their ties to other affected families and individuals. Plus, they tend to be small, giving them the opportunity to pivot and explore the way larger organizations cannot because of the red tape and bureaucracy that often comes with the size and structure of larger academic institutions. Smaller start ups with corporate backing typically have that advantage of agility as well.

Featured image: Caution tape by Eugene Zemlyanskiy 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: featured commenters, net-friendly docs, patient networks, social media Tagged With: participatory medicine, Patient Community, peer-to-peer healthcare

Reader Interactions

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