By using this site, you agree to the Privacy Policy and Terms of Use.
Accept
Health Works CollectiveHealth Works CollectiveHealth Works Collective
  • Health
    • Mental Health
    Health
    Healthcare organizations are operating on slimmer profit margins than ever. One report in August showed that they are even lower than the beginning of the…
    Show More
    Top News
    stress disorder
    5 Ways To Manage Post-Traumatic Stress Disorder
    October 27, 2021
    Medical device classification and development strategies
    Medical device classification and development strategies
    April 5, 2023
    varicose veins
    Varicose Veins Prevention: 3 Lifestyle Changes to Make Right Now
    May 1, 2022
    Latest News
    The Hidden Impact Of Stress On Your Body’s Alignment And Balance
    May 22, 2025
    Chewing Matters More Than You Think: Why Proper Chewing Supports Better Health
    May 22, 2025
    Grounded Healing: A Natural Ally for Sustainable Healthcare Systems
    May 30, 2025
    Choosing the Right Supplement Manufacturer for Your Brand
    May 1, 2025
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
    Policy and Law
    Get the latest updates about Insurance policies and Laws in the Healthcare industry for different geographical locations.
    Show More
    Top News
    stetho-snopes image
    Stetho-Snopes: Time for Some Rigorous Myth-Busting in Healthcare?
    June 24, 2013
    The PCMH and Home Care Data: An Interview with Melissa McCormack
    December 19, 2013
    socap
    We Need to Measure What Counts, Not What We’re Paid to Count
    July 16, 2014
    Latest News
    Building Smarter Care Teams: Aligning Roles, Structure, and Clinical Expertise
    May 18, 2025
    The Critical Role of Healthcare in Personal Injury Recovery: A Comprehensive Guide for Victims
    May 14, 2025
    The Backbone of Successful Trials: Clinical Data Management
    April 28, 2025
    Advancing Your Healthcare Career through Education and Specialization
    April 16, 2025
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: From Patient Partner to Patient Leader
Share
Notification Show More
Font ResizerAa
Health Works CollectiveHealth Works Collective
Font ResizerAa
Search
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > Policy & Law > Public Health > From Patient Partner to Patient Leader
eHealthPolicy & LawPublic Health

From Patient Partner to Patient Leader

Pam Todd
Last updated: March 20, 2014 8:11 am
Pam Todd
Share
5 Min Read
leader
SHARE

Remember when patients were passive receivers of care and the only thing that mattered was what the doctor thought? Neither do I.leader

Remember when patients were passive receivers of care and the only thing that mattered was what the doctor thought? Neither do I.leader

Empowered patients have become so integral to healthcare that it is hard to recall a time when it was otherwise. There have been seismic shifts, starting with clinical trials and running all the way through diagnosis and treatment; rather than leveling off, the movement is growing. The trend continues to be toward more participation, partnership, and importance placed on patients’ and caregivers’ right to choose what is best for their own lives. Clearly there is something going on here that makes for better healthcare.

Collaborative Knowledge
For example, consider WikiProject Medicine, a collaborative effort to improve the quality of Wikipedia medical articles spearheaded by Canadian ER physician James Heilman, MD. The project received a lot of media attention when it became the focus of a for-credit class offered for fourth-year medical students at UCSF School of Medicine by Professor Amin Azzam, who enlisted his students in editing articles.

More Read

Image
AMA Awards $11M to Medical Schools Poised to Transform #meded
Using Wireless Networks to Detect Falls In the Elderly
Alzheimers Onset Less in Bilingual
How Do You Talk About Cancer?
The Top 5 Mistakes Hospitals with High Readmission Rates Are Making

What is significant is that Azzam sees the project as a way of helping his students understand their professional obligation to contribute to the digital community. As ePatient Dave notes in his post on the wiki, “patients and professionals have equal authority” in the digital community and that is its strength. Wikipedia lets anyone edit an article and it’s thriving. Whereas Medpedia, a parallel platform that limited editing to credentialed professionals, was discontinued.

The Patient Voice at the FDA
The FDA has shown increased flexibility in their handling of drug approvals, partially because they have been told by patients with serious or life-threatening illnesses who lack good alternatives that they are willing to make some trade-offs in order to gain access. In response to the needs of the rare disease community, the FDA has also stated “there is no reason to expect drugs to be tested on similar numbers of patients, regardless of the disease.”

The FDA’s growing recognition of their duty to respond to patients’ unmet needs was responsible for a special provision of the Food and Drug Administration Safety and Innovation Act (FDASIA), which calls for FDA to set up a “Patient-Focused Drug Development Initiative” to better take into account the views of patients during the regulatory review process.

An interesting example of how the patient voice is being incorporated into the FDA’s process is the recently released new draft guidance intended to expedite development of drugs for chronic fatigue syndrome (CFS). Little is known about this condition and there are no tests to determine its cause, making it difficult to establish clinical endpoints. To fill the gap, the draft guidance recommends that trials “should include patient-reported symptoms using well-defined and reliable patient-reported outcome (PRO) instruments.”

The Decision Should Fall to the Patient
A recent post on The Health Care Blog impressed upon me just how profound this shift toward patient empowerment has become. After discussing their opinion of the relative value of clinical guidelines, Robert McNutt, MD and Nortin Hadler, MD conclude by saying:

“The patient is not the partner in medical care; the patient is the leader, the pilot, the decision-maker. Patients don’t need recommendations; they need information about the added benefit of one therapy versus another balanced against the added harm of the therapy. People are smart enough to make the trade-offs; they don’t need to be told what to do.”

What then is the role of the doctor? Here is their answer:

“Changing medicine from a ‘telling what to do’ profession to a ‘telling the patient the information’ profession will lead us to a better system of care, better in every way. The profession of medicine should have the goal to serve and inform, not recommend.”

It’s quite a power shift, isn’t it; and we would do well to keep it in mind, whether we are doctors, nurses, pharma marketers, patients, or caregivers, because it has the potential to heal our healthcare system.

I don’t know about you, but I feel better already.

Photo courtesy of Damien Dempsey on Flickr

TAGGED:collaborative healthempowered patient
Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

Modern Teeth Whitening Technologies Used by Clinics in Ireland
Modern Teeth Whitening Technologies Used by Clinics in Ireland
Dental health
May 29, 2025
stress impact your health
The Hidden Impact Of Stress On Your Body’s Alignment And Balance
Health Wellness
May 22, 2025
chewing better for health
Chewing Matters More Than You Think: Why Proper Chewing Supports Better Health
Dental health Health
May 22, 2025
Do You Grind Your Teeth at Night? Here’s How Night Guards and TMJ Treatments Can Help
Do You Grind Your Teeth at Night? Here’s How Night Guards and TMJ Treatments Can Help
Dental health
May 21, 2025

You Might also Like

Wyden/Ryan Medicare Plan is a Loser

December 16, 2011
doctor and nurse shortage
Health care

Thoughts On Solving The Looming Primary Care Doctor Shortage

February 9, 2019
Marie Ennis-O'Conner
Social Media

A Must-Follow Social Media Advisor

December 2, 2015
Must Have Apps for Nurses | HospitalRecruiting.com
DiagnosticseHealthMobile Health

Must Have Apps for Nurses

February 5, 2016
Subscribe
Subscribe to our newsletter to get our newest articles instantly!
Follow US
© 2008-2025 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Username or Email Address
Password

Lost your password?