Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Why I tweet: A patient advocate view

Jessie Gruman, PhD
Social media
February 3, 2014
Share
Tweet
Share

Twitter — its functions, benefits, risks and limitations — has figured prominently in the heated discussion about Emma and Bill Keller’s respective editorials in The Guardian (since deleted, though the archived version is still available) and the New York Times about the Twitter feed of Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly personal tweets about the ups and downs of what it takes for her to face the challenges of metastatic breast cancer. Her generosity of spirit is a gift to many of us.

In comparison, I am a different type of tweeter, posting a weekday stream of tweets aimed at addressing generally the subject that Lisa talks about so personally: finding and making the best possible use of health care. This is a description of what I tweet — and why.

Since 1992, I have advocated for all of us to have the information, support and guidance we need to act to improve our health and get the most from our health care. I believe — and there is evidence to back me up — that we do better when we participate in our care to the extent we are able with as much knowledge about what might work that we can absorb.

As someone who has been/is being treated for five different types of cancer, I am familiar with many of the challenges we face in getting the most out of our health care. We not only need to know about our specific diseases and treatments and what we can do about them, but we also need to know something about how our care is organized and about changes in general health knowledge and medical practice that affect how we make use of the resources and services available to us. Then we have to act on our own behalf or on behalf of our child, partner, spouse or parent. The organization I direct, the Center for Advancing Health, has mapped out the tasks that are now ours — the many actions we must take to find good health care and benefit from it.

Every weekday, I tweet a carefully chosen stream of new evidence, analysis and commentary that covers all the health and health care angles that we — sick or well — might need to know about. I tweet material from major news outlets, peer-reviewed literature, blogs and magazines in the belief that thoughtful consideration of emerging information and understandings about health and health care will serve us well.

Here’s why I tweet what I tweet:

  • It has never been more important for us to be well-informed about so many aspects of health care — not just our complaint of the moment. Otherwise, when we are passive recipients of care, we risk being on the receiving end of medical errors, spending money on unnecessary tests, receiving suboptimal care or simply not knowing how we can best help ourselves. I aim to tweet what we need to know.
  • Evidence has never been more important. Especially considering media reports that much of the care we receive may not be consistent with evidence of what is currently deemed most effective. Combined with the rapid pace of new findings, understanding the facts relevant to your situation can be intimidating to patients and health professionals alike. Plus, it’s time-consuming for us to sort out solid information from broad assertions and slick advertisements, so I aim to tweet evidence worth noting, with the understanding that next week’s evidence may reverse what we know today.
  • Finding high-quality analysis and commentary that is relevant to the decisions we must make about our health and care every day is a bear. I know. I wouldn’t be traipsing through 40+ different sites every day in search of the best pieces if they were located in one place. I aim to tweet links to useful, diverse analyses and findings.
  • Understanding health and health care is not just a matter of digesting new facts. It also includes considering implications of those facts and different perspectives on policies so that the facts have context and meaning. I aim to include articles that tweak easy assumptions, shed light in dark corners and sometimes make me smile.
  • Lastly, it’s funner than heck to do this. I have an insatiable taste for gossip, a fascination with trying to figure out what we really need to know to care for ourselves, a long memory for ineffective-but-nevertheless-repeated health care foibles and an impulse toward snarkiness that occasionally breaks through. Spending a couple of hours each day trawling online for new findings, blogs, articles and essays that I think you might find interesting is a great way to start the day.

Who would have thought that this tiny aperture — a mere 140 characters — could connect me with so many smart, feisty people who improve and amplify my efforts to spread this carefully chosen content through their responses, retweets, modified tweets and acknowledgements?

Not me. I am amazed and grateful.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

Prev

Be suspicious of the marketing for essential oils

February 3, 2014 Kevin 10
…
Next

Use crowdsourcing to develop clinical trials

February 4, 2014 Kevin 0
…

Tagged as: Oncology/Hematology, Patients, Twitter

Post navigation

< Previous Post
Be suspicious of the marketing for essential oils
Next Post >
Use crowdsourcing to develop clinical trials

ADVERTISEMENT

More by Jessie Gruman, PhD

  • a desk with keyboard and ipad with the kevinmd logo

    Authorities overestimate patients’ health literacy

    Jessie Gruman, PhD
  • a desk with keyboard and ipad with the kevinmd logo

    The effort it takes to become an engaged patient

    Jessie Gruman, PhD
  • a desk with keyboard and ipad with the kevinmd logo

    How entitlement undermines patient engagement

    Jessie Gruman, PhD

More in Social media

  • First impressions happen online—not in your exam room

    Sara Meyer
  • What teenagers on TikTok are saying about skin care—and why that’s a problem

    Khushali Jhaveri, MD
  • How social media and telemedicine are transforming patient care

    Jalene Jacob, MD, MBA
  • How DrKoop.com rose and fell: the untold story behind the Surgeon General’s startup

    Nigel Cameron, PhD
  • How I escaped the toxic grip of social media

    Dr. Damane Zehra
  • Why doctors must fight health misinformation on social media

    Olapeju Simoyan, MD
  • Most Popular

  • Past Week

    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance
    • How AI, animals, and ecosystems reveal a new kind of intelligence

      Fateh Entabi, MD | Tech
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • A physician employment agreement term that often tricks physicians

      Dennis Hursh, Esq | Finance
    • The hidden moral injury behind value-based health care

      Jonathan Bushman, DO | Physician
    • When medicine surrenders to ideology

      Anonymous | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Who gets to be well in America: Immigrant health is on the line

      Joshua Vasquez, MD | Policy
    • Why specialist pain clinics and addiction treatment services require strong primary care

      Olumuyiwa Bamgbade, MD | Conditions
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • When medicine surrenders to ideology

      Anonymous | Physician
    • How just culture can reduce burnout and boost health care staff retention

      Olumuyiwa Bamgbade, MD | Physician
    • Why embracing imperfection makes you truly unforgettable

      Osmund Agbo, MD | Physician
    • Affordable postpartum hemorrhage solutions every OB/GYN should know

      Frank I. Jackson, DO | Conditions
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 1 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance
    • How AI, animals, and ecosystems reveal a new kind of intelligence

      Fateh Entabi, MD | Tech
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • A physician employment agreement term that often tricks physicians

      Dennis Hursh, Esq | Finance
    • The hidden moral injury behind value-based health care

      Jonathan Bushman, DO | Physician
    • When medicine surrenders to ideology

      Anonymous | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Who gets to be well in America: Immigrant health is on the line

      Joshua Vasquez, MD | Policy
    • Why specialist pain clinics and addiction treatment services require strong primary care

      Olumuyiwa Bamgbade, MD | Conditions
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • When medicine surrenders to ideology

      Anonymous | Physician
    • How just culture can reduce burnout and boost health care staff retention

      Olumuyiwa Bamgbade, MD | Physician
    • Why embracing imperfection makes you truly unforgettable

      Osmund Agbo, MD | Physician
    • Affordable postpartum hemorrhage solutions every OB/GYN should know

      Frank I. Jackson, DO | Conditions
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Why I tweet: A patient advocate view
1 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...