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

Are physicians ready for the e-patient movement?

Don S. Dizon, MD
Physician
February 21, 2014
Share
Tweet
Share

asco-logoI gave a talk recently to a group of my peers about addressing the needs of patients after a diagnosis of cancer, emphasizing points where transitions occur — from treatment, to end of therapy, surveillance, recurrence, and extending all the way up to the end of life — and how important it is to consider the entire journey of a person with cancer, from patient to survivor.

One of my goals of this talk was to address the need for oncologists to engage those actually diagnosed with cancer, the most interested of the “stakeholders.” I asked my colleagues if they had heard of a movement afoot in medicine, that of patient engagement, and whether they knew of folks like David deBronkart (alias e-Patient Dave). I was met with a few nods, but mostly none had heard of either. In truth, I was surprised to see that the patient engagement movement had not achieved greater familiarity with my audience.

On Google, the term “patient engagement” brings up over 48 million hits. There are even organizations that aim to spur on this evolution in medical care, such as the Society of Participatory Medicine and the Center for Advancing Health. Patients who are engaged are often termed “e-patients.”  They have turned to the Internet to learn about their afflictions, read up on biology, treatments available, etc. They are interested in determining for themselves where to go for the best care, including what treatments are undergoing investigation. Indeed, they are demanding better care, and a more active role in their own treatment, as well as for those they love and advocate for.

The “awakening” of the e-patient has been tied to the seriousness of the medical condition one has been diagnosed with.  As described in the e-patient white paper, when one develops a more severe medical condition, they are more likely to adopt a higher level of medical knowledge enabling a more competent and in control persona, which is associated with greater assertiveness and autonomy with medical providers.  Indeed, anyone on social media is well aware of the on-line communities where peer-to-peer sharing of information and emotional support is ongoing on a weekly basis (shout-out to #bcsm).

These characteristics describe the patients I am seeing in the context of a routine clinical visit. More and more often, patients are coming in with fairly sophisticated questions about their pathology, treatment regimens, and clinical trial options. I have found myself rendering treatment recommendations only after I’ve sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them.

Unfortunately, this is not a universal experience. During a healthcare leader (#hcldr) tweetchat in December, I exchanged tweets around the topic of patient engagement. Specifically, we had exchanged thoughts about patients presenting to their clinicians with new information they wished to discuss and how some advocates are keen to teach others about approaching their doctors with data:

@nursefriendly @dbarrath @drdonsdizon Part of what I’ve tried to do is teach how to use web info btr in appts, not “reams” 🙂 #hcldr

— P. F. Anderson (@pfanderson) December 4, 2013

@pfanderson @dbarrath @drdonsdizon Naturally, but when they get home, #patients, #caregivers can get carried away 🙁 #HCLDR — Andrew Lopez, RN (@nursefriendly) December 4, 2013

And then this tweet came in:

@pfanderson @nursefriendly @dbarrath @drdonsdizon I’m at cardiologist w/Dad. Last appt I gave MD 1p med update- he pushed it back at me. — David R. Van Houten (@DavidrVH) December 4, 2013

Unfortunately, medicine today has been slow to evolve; the experience of Mr. Van Houten is one shared by many involved on social media, and it is one that I believe is going to need to change. We can start by getting more involved in the information our patients and their families are accessing and to do so calls us to think and interact beyond the confines of the examination room.

Although patients are accessing the web for health information, there is a deep skepticism about what they are accessing. For our patients, this was shown in the Health Information National Trends Study (HINTS), in which although over 50% of patients turned to the Internet first for cancer-related information, the proportion of those who trust the information they find is less than 20%. This points to the tremendous need for better and more accurate information; a need that we must fulfill. Fortunately, there are venues where we can make a difference.

Specifically, I applaud ASCO’s site, Cancer.net, for filling that gap where patients can access timely information. Coupled with the active social media groups on-line, like #gyncsm (for gynecologic cancers), #bcsm (for breast cancers), and #lcsm (for lung cancers), there is a great capacity to make a difference. What it needs is the presence of the experts- those clinicians who can speak from their own experience, who understand the data, and can educate an audience far beyond their local practices. This is the opportunity present for education at a massive scale, which may yet translate into a better use of the time when clinicians and patients are face to face (F2F). And to Mr. VanHouten, I only had this to say:

ADVERTISEMENT

@DavidrVH 2 words: Keep pushing. If its impt to you they will understand. Eventually. @pfanderson @nursefriendly @dbarrath

— Don S Dizon (@drdonsdizon) December 4, 2013

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

Prev

Obamacare: What will the administration back off on next?

February 21, 2014 Kevin 0
…
Next

MKSAP: 32-year-old woman with chronic fatigue syndrome

February 22, 2014 Kevin 4
…

Tagged as: Oncology/Hematology, Patients, Twitter

Post navigation

< Previous Post
Obamacare: What will the administration back off on next?
Next Post >
MKSAP: 32-year-old woman with chronic fatigue syndrome

ADVERTISEMENT

More by Don S. Dizon, MD

  • As an oncologist, this is the hardest role I play

    Don S. Dizon, MD
  • Why physicians should acknowledge the validity of second opinions

    Don S. Dizon, MD
  • A patient who taught an important lesson in doctoring

    Don S. Dizon, MD

More in Physician

  • Will longevity medicine put doctors out of work?

    Tomi Mitchell, MD
  • Why the doctor-patient relationship needs a redesign

    Alexandra Novitsky, MD
  • Imposter syndrome is not a personal failing

    Jessie Mahoney, MD
  • How functional medicine fills the gaps left by conventional care

    Sally Daganzo, MD
  • A step‑by‑step guide to crafting meaningful research questions

    Julian Gendreau, MD
  • How restrictive opioid policies worsen the crisis

    Kayvan Haddadan, MD
  • Most Popular

  • Past Week

    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • Could antibiotics beat heart disease where statins failed?

      Larry Kaskel, MD | Conditions
    • How restrictive opioid policies worsen the crisis

      Kayvan Haddadan, MD | Physician
    • Why palliative care is more than just end-of-life support

      Dr. Vishal Parackal | Conditions
    • When life makes you depend on Depends

      Francisco M. Torres, MD | Physician
    • Guilty until proven innocent? My experience with a state medical board.

      Jeffrey Hatef, Jr., MD | Physician
  • Past 6 Months

    • Why transgender health care needs urgent reform and inclusive practices

      Angela Rodriguez, MD | Conditions
    • COVID-19 was real: a doctor’s frontline account

      Randall S. Fong, MD | Conditions
    • Why primary care doctors are drowning in debt despite saving lives

      John Wei, MD | Physician
    • New student loan caps could shut low-income students out of medicine

      Tom Phan, MD | Physician
    • Why pain doctors face unfair scrutiny and harsh penalties in California

      Kayvan Haddadan, MD | Physician
    • mRNA post vaccination syndrome: Is it real?

      Harry Oken, MD | Conditions
  • Recent Posts

    • Will longevity medicine put doctors out of work?

      Tomi Mitchell, MD | Physician
    • When doctors don’t talk: a silent failure in modern medicine

      Cesar Querimit, Jr. | Conditions
    • The many faces of physician grief

      Annia Raja, PhD | Conditions
    • Why the doctor-patient relationship needs a redesign

      Alexandra Novitsky, MD | Physician
    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • Imposter syndrome is not a personal failing

      Jessie Mahoney, MD | Physician

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 6 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

    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • Could antibiotics beat heart disease where statins failed?

      Larry Kaskel, MD | Conditions
    • How restrictive opioid policies worsen the crisis

      Kayvan Haddadan, MD | Physician
    • Why palliative care is more than just end-of-life support

      Dr. Vishal Parackal | Conditions
    • When life makes you depend on Depends

      Francisco M. Torres, MD | Physician
    • Guilty until proven innocent? My experience with a state medical board.

      Jeffrey Hatef, Jr., MD | Physician
  • Past 6 Months

    • Why transgender health care needs urgent reform and inclusive practices

      Angela Rodriguez, MD | Conditions
    • COVID-19 was real: a doctor’s frontline account

      Randall S. Fong, MD | Conditions
    • Why primary care doctors are drowning in debt despite saving lives

      John Wei, MD | Physician
    • New student loan caps could shut low-income students out of medicine

      Tom Phan, MD | Physician
    • Why pain doctors face unfair scrutiny and harsh penalties in California

      Kayvan Haddadan, MD | Physician
    • mRNA post vaccination syndrome: Is it real?

      Harry Oken, MD | Conditions
  • Recent Posts

    • Will longevity medicine put doctors out of work?

      Tomi Mitchell, MD | Physician
    • When doctors don’t talk: a silent failure in modern medicine

      Cesar Querimit, Jr. | Conditions
    • The many faces of physician grief

      Annia Raja, PhD | Conditions
    • Why the doctor-patient relationship needs a redesign

      Alexandra Novitsky, MD | Physician
    • Health equity in Inland Southern California requires urgent action

      Vishruth Nagam | Policy
    • Imposter syndrome is not a personal failing

      Jessie Mahoney, MD | Physician

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

Are physicians ready for the e-patient movement?
6 comments

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

Loading Comments...