Patients get called a lot of things these days. Simon Stevens, for example, referred to them as the “renewable energy” of health services. The NHS White Paper called them “the heart” of the NHS. We at PRIMER (the Primary care Research in Manchester Engagement Resource), however, decided to call them hackers. More specifically, we invited […]
Category: Patient perspectives
Philip van der Wees: Patient preferences to distinguish between good and bad practice variation
“Keeping good practice variation and reducing bad practice variation is a main driver for quality improvement in healthcare.” With this key message, Albert Mulley, professor at the Dartmouth Center for Health Care Delivery Science in the United States, summarized his keynote presentation at the fourth conference of the Scientific Institute for Quality of Healthcare at […]
Amy Price: Patients doing research for themselves
Patient rights and empowerment movements have grown exponentially over the last decade. Shared data movements and clinical decision making may employ slogans like “having a voice,” “nothing about me, without me,” and “give me my damn data,” all these expressions share the language of loss and blame. Vision and partnership are not built by crying […]
Lucien Engelen: Flipping the coin from “for patients” to “by patients”
Although I still suspect my wife may have paid extra for a non-connected holiday home in the French Ardèche, it turned out pretty well to be honest. The first two days I tried every corner of the premises (a small summer castle on top of a mountain in Les Ollièrres sur Eyrieux) to see if there […]
Anne Forshaw and Rowena Merritt: How can we increase primary care access for patients from disadvantaged groups?
Disadvantaged groups of the population tend to have low rates of access to primary care, yet have a greater incidence of chronic diseases. Earlier and more frequent visits to a healthcare professional (HCP) would positively affect their health outcomes, but barriers to accessing primary care remain for these groups. M•E•L Research was commissioned by The National Social […]
Neal Maskrey: When paradigms shift
When paradigms shift it’s always disconcerting. Thomas Samuel Kuhn published The Structure of Scientific Revolutions in 1962 and it’s become a decisive text on the nature of science. He used the term “paradigm” to describe the belief system that underpins puzzle solving in science. Far from discovering any absolute “truth,” normal science progresses routinely within […]
Richard Smith: Patients harmed by misdiagnosed preferences
Linda is 58 and has been diagnosed with breast cancer. She would have preferred not to have surgery but was convinced by her surgeon that it would be the best option. After her operation, the hospital contacted her to apologise as she had not had breast cancer. She’d been misdiagnosed. An inquiry, legal action, and […]
William Cayley: My Chief Complaint
My chief complaint . . . is with the chief complaint. One of the hallowed concepts in medical history taking and documentation is the “chief complaint.” Supposedly a way to set the agenda for a medical visit, in current practice it often gets both distorted and treated as a boundary setter. Ideally, in medicine, we […]
Helen Morant: Characters welcome
You’d expect an academic researching the influence of TV and games on children’s development to be presenting some data about violent games as causative factors in school shootings. But Sandra Calvert, a professor of psychology and director of the Children’s Digital Media Center, is talking about the role of characters—especially online characters in interactive educational games—in children’s […]
Dawn Richards: A Canadian arthritis patient charter
In 2014 the Canadian Arthritis Patient Alliance (CAPA) undertook the creation of an Arthritis Patient Charter. The arthritis community in Canada has a history of collaboration, to which this project was no exception. In 2001 the creation of an Arthritis Patient Bill of Rights (English and French versions) was led by the Arthritis Society with […]