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

Patient advocacy groups should help support research

Christopher Johnson, MD
Patient
August 25, 2011
Share
Tweet
Share

I was a medical researcher for several decades, investigating an unusual, but not rare, condition called infective endocarditis. I found the disease fascinating, primarily because of how understanding it could unlock many secrets of the endothelial cell, the cells lining all our blood vessels. I chose my research subject because it interested me and I thought I could do some good studying it. This is the case for most medical researchers.

Of course, there are incentives nudging researchers toward working on a particular disease. The main one is research funding. Most of my work was funded either by the National Institutes of Health or the American Heart Association. Both organizations, and others like them, from time to time issue invitations to apply for funding in a particular area, one identified by the organization as being in particular need of special support.

In general, though, the approach has been to let researchers propose to these organizations projects of interest to the investigators and let the funding committees choose the best among them. Directed research, telling investigators what to work on, has been viewed with suspicion; it is best to let smart people work on whatever they think best.

There are good reasons why this is a good default position. Very, very often directed research doesn’t get us answers because the answers often come from unexpected places. I can think of many examples where breakthroughs in understanding a particular disease came from research that, at first blush, seemed totally unrelated to it.

However, a problem with this paradigm is that, if no directed research happens, rare and unusual conditions may remain completely mysterious for years, maybe forever, because no medical researcher happens to be interested in them. Patient advocacy groups have an important role to play in such situations.

There’s an interesting example in a recent New England Journal of Medicine of the potential power of these groups. The articles concern a very rare disorder called lymphangioleiomyomatosis, a devastating disease that can strike young women. Because it is so rare, it attracted little attention from medical researchers. Then a mother of a woman with the disease started a patient advocacy group and founded the LAM Foundation. Her tireless efforts attracted some interest, and the money the foundation offered to researchers served as seed money for them to develop grant funding proposals to organizations and agencies with deeper pockets. The LAM Foundation served as a kind of venture capitalist for the research effort. The result of this has been significant strides not only understanding this disease, but useful treatments, too.

I think the other important point to take from this example is that patient advocacy groups should aim to spend most of their precious resources, not on advertising and organizational structure (a chronic pitfall for nonprofits), but on actual research support undertaken on the advice of experts.

Christopher Johnson is a pediatric intensive care physician and author of Your Critically Ill Child: Life and Death Choices Parents Must Face, How to Talk to Your Child’s Doctor: A Handbook for Parents, and How Your Child Heals: An Inside Look At Common Childhood Ailments.  He blogs at his self-titled site, Christopher Johnson, MD.

Prev

Medicare patients should bring a companion to office visits

August 25, 2011 Kevin 7
…
Next

Why technology should never takeover the patient encounter

August 25, 2011 Kevin 2
…

Tagged as: Patients

Post navigation

< Previous Post
Medicare patients should bring a companion to office visits
Next Post >
Why technology should never takeover the patient encounter

ADVERTISEMENT

More by Christopher Johnson, MD

  • The success of Australian firearms regulation: What it could mean for children

    Christopher Johnson, MD
  • Do protocols and pathways improve care?

    Christopher Johnson, MD
  • Why are so many community hospitals transferring children to larger facilities?

    Christopher Johnson, MD

More in Patient

  • AI’s role in streamlining colorectal cancer screening [PODCAST]

    The Podcast by KevinMD
  • There’s no one to drive your patient home

    Denise Reich
  • Dying is a selfish business

    Nancie Wiseman Attwater
  • A story of a good death

    Carol Ewig
  • We are warriors: doctors and patients

    Michele Luckenbaugh
  • Patient care is not a spectator sport

    Jim Sholler
  • Most Popular

  • Past Week

    • The human case for preserving the nipple after mastectomy

      Thomas Amburn, MD | Conditions
    • Nuclear verdicts and rising costs: How inflation is reshaping medical malpractice claims

      Robert E. White, Jr. & The Doctors Company | Policy
    • How new loan caps could destroy diversity in medical education

      Caleb Andrus-Gazyeva | Policy
    • IMGs are the future of U.S. primary care

      Adam Brandon Bondoc, MD | Physician
    • Why physicians should not be their own financial planner

      Michelle Neiswender, CFP | Finance
    • Why doctors struggle with family caregiving and how to find grace [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • How restrictive opioid policies worsen the crisis

      Kayvan Haddadan, MD | Physician
    • Why primary care needs better dermatology training

      Alex Siauw | Conditions
    • Why pain doctors face unfair scrutiny and harsh penalties in California

      Kayvan Haddadan, MD | Physician
    • How a doctor defied a hurricane to save a life

      Dharam Persaud-Sharma, MD, PhD | Physician
    • What street medicine taught me about healing

      Alina Kang | Education
  • Recent Posts

    • Why physicians should not be their own financial planner

      Michelle Neiswender, CFP | Finance
    • Why doctors regret specialty choices in their 30s

      Jeremiah J. Whittington, MD | Physician
    • 10 hard truths about practicing medicine they don’t teach in school

      Steven Goldsmith, MD | Physician
    • The myth of biohacking your way past death

      Larry Kaskel, MD | Conditions
    • How trust and communication power successful dyad leadership in health care [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why Hollywood’s allergy jokes are dangerous

      Lianne Mandelbaum, PT | Conditions

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 2 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

ADVERTISEMENT

  • Most Popular

  • Past Week

    • The human case for preserving the nipple after mastectomy

      Thomas Amburn, MD | Conditions
    • Nuclear verdicts and rising costs: How inflation is reshaping medical malpractice claims

      Robert E. White, Jr. & The Doctors Company | Policy
    • How new loan caps could destroy diversity in medical education

      Caleb Andrus-Gazyeva | Policy
    • IMGs are the future of U.S. primary care

      Adam Brandon Bondoc, MD | Physician
    • Why physicians should not be their own financial planner

      Michelle Neiswender, CFP | Finance
    • Why doctors struggle with family caregiving and how to find grace [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • How restrictive opioid policies worsen the crisis

      Kayvan Haddadan, MD | Physician
    • Why primary care needs better dermatology training

      Alex Siauw | Conditions
    • Why pain doctors face unfair scrutiny and harsh penalties in California

      Kayvan Haddadan, MD | Physician
    • How a doctor defied a hurricane to save a life

      Dharam Persaud-Sharma, MD, PhD | Physician
    • What street medicine taught me about healing

      Alina Kang | Education
  • Recent Posts

    • Why physicians should not be their own financial planner

      Michelle Neiswender, CFP | Finance
    • Why doctors regret specialty choices in their 30s

      Jeremiah J. Whittington, MD | Physician
    • 10 hard truths about practicing medicine they don’t teach in school

      Steven Goldsmith, MD | Physician
    • The myth of biohacking your way past death

      Larry Kaskel, MD | Conditions
    • How trust and communication power successful dyad leadership in health care [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why Hollywood’s allergy jokes are dangerous

      Lianne Mandelbaum, PT | Conditions

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

Patient advocacy groups should help support research
2 comments

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

Loading Comments...