Service-User and Caregiver Resources (Introductory)

Resources for Patients

[Ontario SPOR Support Unit]

Presentations and surveys developed by Patients Canada for service-users and caregivers interested in becoming involved in research. The PowerPoint presentation "Citizens Partnering in Research" is a good place to start, and includes details on levels of involvement (Information Sharing, Consultation, Collaboration, and Partnership) that serves as a guide for the Hatching Ideas lab and many other patient engagement organisations. 

 

For Citizens Partnering in Research

[Patients Canada]

Described above, this PowerPoint presentation was developed by Patients Canada as a resource developed from the service-user's, as opposed to the researcher's, perspective. A good place to find out what a successful partnership looks like. Details what the research team should be doing to make engagement a meaningful and worthwhile experience. 

 

Engaging Patients in Patient Safety: A Canadian Guide (Patient Engagement Action Team 2017)

[Canadian Patient Safety Institute - CPSI]

A guide developed by the Canadian Patient Safety Institute (CPSI) intended for, "patients and families interested in how to partner in their own care to ensure safety." Although the guide does include a great deal about patient partnerships in the context of medical safety research, most of the observations are applicable to patient engagement in any healthcare sector. The guide is full of useful web-links, and makes up part of a series put out by the CPSI that can be found here: [WEBLINK}

 

Patients as Partners in Research

[Patients Canada]

This three-page document provides a list of questions that service-users or caregivers partnering in research might want to consider asking when first recruited to a research team. Guidance includes details on "What I Should Already Know," understanding the project, and participating in meetings. If you're collaborating with a research team and there's anything listed here that you haven't been informed about, then the research team is probably not doing its job as well as it could.   


Patient Voices Network - Resources Section

[Patient Voices Network]

An extensive selection of resources...

Exploring the Purpose and Meaning of Patient Engagement in Pediatric Neurodiversity Research

[Jennifer Johannsen]

Despite its rather technical title, this article contains a wealth of practical information for anyone wanting to become involved in a partnered research study. In addition to the standard details one finds in these write-ups, it discusses parts of the service-user/researcher relationship that aren't usually mentioned in the more "official" guides. In particular, the author talks about the way that patient engagement is frequently symbolic in practice, without much sincere intention that the collaboration actually impact or effect the study (Want to test this? Try disagreeing with the research team you're working with, and see how well they respond to a suggestion that they alter their research plan). 

Service-User and Caregiver Resources      (In-Depth)


Service-User and Caregiver Resources (Writing)

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Service-User and Caregiver Resources (Reading)

How to Read a Scientific Article: A Guide for Non-Scientists

[Jennifer Raff]

A brief, three-page introduction to reading scientific articles. Written by Jennifer Raff, this article was originally posted on her blog "Violent Metaphors," and became so popular that it was converted into a downloadable PDF. A useful guide for collaborators new to medical research, with step-by-step information on how to break down and analyze a journal article quickly.

 

How to Read and Understand a Scientific Paper

[Marie Ennis-O'Connor - Patient Empowerment Network]

A short article written by Marie Ennis-O'Connor for the Patient Empowerment Network on how to efficiently read and understand a medical article... 

 

The Importance of Understanding Research

[Janice Reynolds - Pain News Network]

A short blog post that describes some of the more widely employed terms used by researchers when describing their studies. A good resource if you want to familiarize yourself with a some of the higher level jargon you might encounter in meetings and academic articles.  


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Service-User and Caregiver Resources (Education & Training)


Jargon Buster Documents

These lists have been developed by various healthcare agencies to assist service-users and caregivers to better understand the common terms (jargon) used by healthcare researchers. Becoming broadly familiar with this language will help you participate in meetings, and feel less isolated when physicians and researchers start "speaking research." Though research teams should make efforts to use common language when involving service-users and caregivers, this is an area of collaboration that is frequently forgotten in practice.  

 

CIHR Jargon Buster

[Canadian Institutes for Health Research - CIHR]

An itemized list of common terms (jargon) used by physicians and health researchers, developed by the Canadian Institute for Health Research (CIHR). 

 

A List of Ontario Healthcare Acronyms

[Health Quality Ontario]

An itemized list of common terms (jargon) used by physicians and health researchers, developed by Health Quality Ontario. 

 

INVOLVE Jargon Buster

[INVOLVE]

An itemized list of common terms (jargon) used by health researchers working in the U.K.'s National Health Service (NHS). Though some of these terms are not as frequently used in other countries, a great deal of this jargon is universal.

Service-User and Caregiver Research (Jargon)