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
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: Patient’s Urgent and Ongoing Search for Cancer Information
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 > eHealth > Patient’s Urgent and Ongoing Search for Cancer Information
eHealth

Patient’s Urgent and Ongoing Search for Cancer Information

Andrew Schorr
Andrew Schorr
Share
5 Min Read
SHARE

blog-photoAs we have written many times here, the pace of research and discovery in many cancer types is accelerating. I wish it was for all cancers, but I take heart in that it is for some.

blog-photoAs we have written many times here, the pace of research and discovery in many cancer types is accelerating. I wish it was for all cancers, but I take heart in that it is for some. Two of which I have: CLL and myelofibrosis. I thought I was in the minority of people who are on a daily quest for “what’s new.” But a preliminary look at the results from our ongoing Patient Power 2014 Survey shows I am far from alone. Many patients today not only seek information at time of diagnosis, they continue to seek information daily, or even weekly, for as long as 10 years after their diagnosis. The quest is ongoing, especially in areas where there is the sense that things are changing. Much of the quest is online, but it is also the willingness to make an extraordinary effort to attend in-person educational events – to meet others and hear from experts. This weekend, I am the host of such an event for CLL patients at MD Anderson Cancer Center in Houston. We thought 75-150 people would attend. But close to 350 plan to. To make sure we had enough room, we asked whether some of the people who registered weeks ago now have had a change of plans. Nobody has. I believe there is an expanding percentage of patients who have taken on the responsibility of understanding and managing their illness and not just leave the decisions to their doctor. Yay!

There are lessons in all this. First, doctors had better be prepared for educated questions and they better have informed answers. Second, the medical industry had better support high-speed, independent channels that inform and empower patients. Industry is either prohibited by law in some quarters from doing that, or by their own onerous regulatory processes. I understand their limits, it just flies in the face of what today’s patients want and expect.

To fill this need well information channels like ours need to work closely with not one hospital or advocacy group, not one expert, but many. It’s what I call “the big tent” approach. We are all in this together and must work together without egos and squabbles to do what’s right for today’s patients. They expect that of us. I am happy to tell you the CLL event is a great example: Patient Power working with the CLL Global Research Foundation, MD Anderson Cancer Center and in collaboration with the Leukemia and Lymphoma Society, CanCare, ACOR.org, and The American Cancer Society. Educational grant support is from AbbVie and Pharmacyclics.  My goal is to reproduce this with other events globally, and sustained digital communications and community in several cancer types.

More Read

There’s More to HealthCare Than Doctors and Hospitals
mHealth Practices: Plugging the Holes
Blogging vs. Other Social Channels
Designing Healthcare Innovation
Jewish Home Lifecare Partners with eCaring to Demonstrate Effectiveness of Home Care Management System for Elderly Home Care Patients

Today I had a meeting with a leader of from MPDVoice and MPN patients in Europe. We were “on the same page” on much of this. So I am heartened, with leaders coming together, we can deliver on what patients want: the latest information to help them be cured or, short of that, to live well with a “chronic cancer; to meet others with the same condition in person or online; and to have the tools to advocate for themselves with their doctors and with government and insurance regulators so they get the care they need and deserve. What’s cool is that the leading doctors support this too, as I heard in my recent interview with Dr. Haifa Al-Ali in Leipzig, Germany. She, like a growing number of here peers “get it” that an informed patient is the best way to move personal care and disease knowledge and discovery forward.

I believe we are on the cusp of big change in several conditions. It’s encouraging. You can still help by adding your voice. If you haven’t already done so, please take a minute to participate in our survey. About 700 people already have but I am reaching for 1,000 responses. Then we’ll have quite a story to tell and a case for supporting the type of activities described above that can help us all.

TAGGED:cancer
Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

dental care
Importance of Good Dental Care for Health and Confidence
Dental health Specialties
October 2, 2025
AI in Healthcare
AI in Healthcare: Technology is Transforming the Global Landscape
Global Healthcare Policy & Law Technology
October 1, 2025
Choosing the Right Swimwear for Health and Safety
News
September 30, 2025
sports concussions
Concussion In Sports: How Common They Are And What You Need To Know
Infographics
September 28, 2025

You Might also Like

Using Data to Improve Patient Satisfaction Scores

April 22, 2015
eHealthMobile Health

How To Use SMS To Increase Customer Satisfaction In Healthcare

August 13, 2019
BusinessMedical RecordsNews

Stage 2 of Meaningful Use Delayed to 2014

December 2, 2011

Medical Device Connectivity (interview with President of Capsule)

November 30, 2011
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?