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Susannah Fox

I help people navigate health and technology.

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disability

Update: A Seat at the Table

June 1, 2019 By Susannah Fox 7 Comments

Fortifications at Colonial Willamsburg by Kate Mereand-Sinha

Last November I attended FAREcon, an annual event devoted to food allergy research and education. I published my notes in a long, deep-dive post that included one short section on pending litigation (below). I’m thrilled to report a positive update: “A federal appeals court Friday ruled against the tavern that refused to let the child […]

Filed Under: key people, policy issues Tagged With: disability, food allergy, Rare Disease

“There are 3 types of people…”

July 16, 2012 By Susannah Fox Leave a Comment

“People who think that people with disabilities can’t do anything, that we’re fragile and in need. People who think we are inspirational and think we can fly to the moon if we wanted to. People who treat us like everyone else, who know that we’ll ask for help if we need it but otherwise we’re […]

Filed Under: research issues Tagged With: disability, Moebius Syndrome

What people living with disability can teach us

January 26, 2011 By Susannah Fox 10 Comments

The Pew Internet Project recently issued a short report noting that people living with disability are less likely than other adults in the U.S. to use the internet: 54%, compared with 81%. The first question many people ask when they hear that is, Why? The second is, What can be done? The third is, or […]

Filed Under: medical records, policy issues Tagged With: connected health, digital divide, disability, HCI, HIT, human-computer interaction, mobile, Pew Internet, PHR, usability

Access is (almost) everything–Susannah Fox

December 22, 2009 By Susannah Fox 1 Comment

Or: Why health geeks should pay attention to internet access geeks. The Pew Research Center’s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.S.: Latinos Online, 2006-2008 From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%.  […]

Filed Under: demographics Tagged With: Access Health, Access Numbers, Baby Boomers, Chronic Conditions, chronic disease, Chronic Diseases, Communicating With Friends, diabetes, disability, Ethnic Categories, Gap, Geeks, health information, Health Problems, Heart Conditions, High Blood Pressure, Income Households, internet access, Internet Penetration, Internet Project, Internet Use, Last Time, Latino Adults, Latinos, Lung Conditions, Moot Point, Older Adults, Percentage Points, Pew Research Center, Saturation, Time Period

Participation Matters–Susannah Fox

October 2, 2009 By Susannah Fox 6 Comments

In politics and in health care, participation matters as much as access. The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in […]

Filed Under: Why PM Tagged With: American Adults, Benchmark, chronic disease, Definition Of The Internet, digital divide, disability, health care, health information, Internet Connections, Internet User, Internet Users, Internet Wirelessly, Laptop Cell Phone, Medical Advice, Mobile Access, Mobile Adoption, Participation, participatory medicine, Passion, pew internet project, Political Campaigns, Voices

E-patients With Chronic Conditions–Susannah Fox

October 9, 2007 By Susannah Fox Leave a Comment

Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I am emailing with an ACOR member […]

Filed Under: patient networks Tagged With: ACOR, cancer, chronic disease, disability, e-patients

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Recent Comments

  • Susannah Fox on The Promise of Patient-Led Research Integration: “Thank you, Lorraine! I will check back on the June meeting to see how the agenda is built out. I’m…” May 9, 17:59
  • Lorraine Johnson on The Promise of Patient-Led Research Integration: “This is a timely topic Susannah! I am serving on the planning committee of The National Academies for a workshop…” May 7, 18:52
  • 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

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