Entries by Marie Ennis-O'Connor

How To Boost Your Online Advocacy Through Blogging

January 2, 2018 in , /by

Are you looking for a way to boost your advocacy activities online? One of the best ways to do this is to create a blog. Many patients blog about their illness as a way to advocate for better treatment and care and to provide guidance and support for other patients. Blogging shows your commitment and […]

A Woman’s Guide to Living with Heart Disease

November 28, 2017 in , , /by

It’s my great pleasure this month to interview Carolyn Thomas, journalist, blogger and heart health advocate. Her popular Heart Sisters blog was recently turned into a book, A Woman’s Guide to Living with Heart Disease. As a heart attack survivor Carolyn is on a mission to educate women about their heart health. Hi Carolyn, can you […]

Fact or Fiction: 10 Common Breast Cancer Myths Busted

October 24, 2017 in , , , /by

October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts.  Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems […]

12 Keys to Finding, Growing, and Nurturing Your Online Community

September 26, 2017 in , /by

“If you want to go fast, go alone; if you want to go far, go together” – African Proverb Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation.  The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected […]

How To Cope With Cancer-Related Fatigue

August 22, 2017 in , , , , , , , , , , , , , , , , , , , /by

We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina […]

Patient Advocacy: Ten Tactics for Mastering Social Media Success

July 19, 2017 in , /by

Social media extends beyond the world of Facebook and Twitter. It encompasses blogs and other newer social platforms such as Instagram, Snapchat and Pinterest. If you want to raise awareness of your cause, amplify your patient advocacy activities, and create change where it’s needed most, social media is an important channel to share your message […]

The Advocate’s Guide to Reporting Live from Conferences and Events

June 20, 2017 in , /by

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. I believe it is part of our role as advocates to […]

Mapping the Patient Information Journey

May 23, 2017 in , /by

Patients need appropriate information tailored to their specific needs at each step of the care pathway. This should begin on the day of diagnosis and continue on through treatment and long term self-management.  Your healthcare journey is a continuum and your information needs change as you move along the patient pathway.  When you are first […]

Don’t Be An Egg Head! Ten Twitter Tips for Patient Advocates

April 24, 2017 in , /by

Last month Twitter announced it is now possible to filter out accounts with the default (egg) profile image, so that they don’t appear in your notifications. While this change is part of the company’s efforts to deal with abuse on the platform, it is also a timely reminder to those Twitter users who still have accounts […]

How to Read and Understand a Scientific Paper

March 22, 2017 in , , , , , , , , , , , , , , , , , , , , /by

In a previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News, I recommended you should always try to read an original study (if cited) to evaluate the information presented. In this follow-on article, you will learn how to read a scientific research paper so that you can come to […]

How to Weigh Up the Benefits and Risks of Treatment…and Why It’s Important That You Do

February 24, 2017 in , , , , , , , , , , , , , , , , , , , , /by

Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests? A new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians […]

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

January 30, 2017 in , , , , , , , , , , , , , , , , , , , , /by

As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one […]

15 Tips To Get the Most From Your Doctor’s Visit

December 27, 2016 in , , , , , , , , , , , , , , , , , , , /by

Have you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving […]

Nothing About Us Without Us: Patient Involvement in Research

November 29, 2016 in , , , , , , , , , , , , , , , , , , , /by

Until recently, patient participation in research was limited to their involvement as subjects enrolled in research studies, but there is a shift occurring as funding bodies increasingly look for evidence of patient and public involvement (PPI) in research proposals. The rationale for this is increasing evidence that PPI in the provision of healthcare leads to […]

The Benefits and Pitfalls of Blogging About Your Illness

October 25, 2016 in , , , , , , , , , , , , , , , , , , , /by

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way […]