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Mapping the Patient Information Journey

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

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

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

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

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

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

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

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 […]

Seven Steps to a Successful Digital Advocacy Strategy

Digital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress. Creating a digital strategy will help you focus on your […]

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Ben Goldacre writing in Bad Science classified science reporting as falling into three categories – wacky stories, scare stories and breakthrough stories; the last of which he views as ”a more subtly destructive category of science story”. Whether you get your news through digital or traditional means, you can’t fail to notice the regularity with […]

A Person Centered Approach To The Care Of Chronic Illness

The World Health Organization has called chronic conditions ‘the health care challenge of this century’. According to the latest figures released by the Centers For Disease Control and Prevention about half of all adults have one or more chronic health conditions; and one of four adults have two or more chronic health conditions. Long-term diseases, […]

Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for […]

The Power of Content Curation for Healthcare Communities

“Getting information off the Internet is like taking a drink from a fire hydrant” – Mitchell Kapor Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content. […]

Shared Decision Making: Putting the Patient At The Center of Medical Care

“Tell me and I forget. Teach me and I remember. Involve me and I learn” – Benjamin Franklin As gravity shifts away from health care providers as the sole keeper of medical information, the importance of sharing decisions, as opposed to clinicians making decisions on behalf of patients, has been increasingly recognized. Shared decision- making […]

Building A Digital Ladder Of Engagement

Building A Digital Ladder Of Engagement In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential […]