Intro to Health Research for Patients

Resources for patients, caregivers and family members: 

Are you curious about health research and patient-oriented research?  Visit our About page to learn how these are a little different.

The BC SUPPORT Unit has curated a collection of resources that we have compiled to help you learn about this fascinating area, whether you're just starting out in understanding health research concepts, or developing your skills as a patient partner. Check out the collection of resources below. 

Do you know of another health research learning resource that we should include for patients? Contact us.

* Recommended if you're looking for comprehensive learning resources.

Resource Name What is it? Where did it come from? How do I get it? Click the following links.

Basic Research Concepts *

Online training modules to promote an understanding of basic research concepts U.S. Department of Health and Human Service https://ori.hhs.gov/content/basic-research-concepts-brc
Considerations when paying patient partners in research A webpage by CIHR explaining SPOR Patient Partner compensation Canadian Institutes
of Health Research
http://cihr-irsc.gc.ca/e/51466.html
Critical Appraisal: a checklist A checklist to learn how to review research articles Students for Best Evidence https://www.students4bestevidence.net/critical-appraisal-checklist/

Critical appraisal 

A tutorial to learn how to review research articles University of Exeter | UK https://libguides.exeter.ac.uk/criticalappraisalhealth
Decision Aids for Patient Partner Engagement with Clinical Trials Decision aids  aimed at helping people decide if they are ready to engage in patient-oriented research.  Clinical Trials Ontario https://www.ctontario.ca/patients-public/resources-for-engaging-patients/
ECRAN Project (Understanding clinical trials) Website aims to make understanding clinical trials easy, and tells you all about taking part in them. European Communication on Research Awareness Needs http://ecranproject.eu/
Evidently Cochrane A blog for everyone who is interested in finding and using the best quality evidence to inform decisions about health.  Cochrane UK http://www.evidentlycochrane.net/

Fundamentals of qualitative research methods: scientific rigor  (NOTE: series of 6 YouTube videos) *

6 video modules covering essential topics in qualitative research, including what it is qualitative research and how to use the most common methods, in-depth interviews and focus groups. Yale University | US https://www.youtube.com/watch?v=7m0LVHK8a94
Health Research Ethics 101 A website that briefly describes health research ethics in Alberta. Health Research Ethics Board of Alberta https://hreba.ca/health-research-ethics-101/

Health Research in Canada and You

A website explaining CIHR and health research in Canada. Canadian Institutes
of Health Research
http://www.cihr-irsc.gc.ca/e/43753.html
How to Read and Understand a Scientific Paper A blog post explaining how to review a scientific paper. Patient Empowerment Network https://powerfulpatients.org/2017/03/22/how-to-read-and-understand-a-sc…

How to read and understand a scientific paper

A blog post explaining how to review a scientific paper. London School of Economics

http://blogs.lse.ac.uk/impactofsocialsciences/2016/05/09/how-to-read-and-understand-a-scientific-paper-a-guide-for-non-scientists/

How to read a paper A blog post explaining how to review a scientific paper. British Medical Journal (BMJ) https://www.bmj.com/about-bmj/resources-readers/publications/how-read-p…
How to read and assess research articles A blog post explaining how to review a scientific paper. American Association for Cancer Research https://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/tools-for-understanding-scientific-journal-articles---page-2___DF8968.aspx
Interpreting Research Studies A blog post explaining how to review a scientific paper. Guttmacher Institute | US https://www.guttmacher.org/sites/default/files/report_pdf/ib_interpreting.pdf

Introduction to Patient-Oriented Research

A short video explaining patient-oriented research Alberta SPOR SUPPORT Unit https://www.youtube.com/watch?v=AJw26lLi_2c&feature=youtu.be
Introduction to the James Lind Alliance: A Participatory Approach to Engage Patients, Caregivers and Clinicians in Priority Setting Partnerships, part 1 A blog post outlining the James Lind Alliance approach Knowledge Nudge blog, Manitoba SPOR SUPPORT Unit https://medium.com/knowledgenudge/introduction-to-the-james-lind-allian…
The James Lind Alliance: An Overview of the Process of Priority Setting Partnerships, part 2  A blog post outlining the James Lind Alliance approach Knowledge Nudge blog, Manitoba SPOR SUPPORT Unit https://medium.com/knowledgenudge/part-ii-the-james-lind-alliance-767a3…
James Lind Alliance Guidebook A training guidebook James Lind Alliance, UK http://www.jla.nihr.ac.uk/jla-guidebook/
James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia –     a Patient’s Perspective A blog post recounting a patient’s involvement in priority setting | Knowledge Nudge blog, Manitoba SPOR SUPPORT Unit http://www.cihr-irsc.gc.ca/e/51183.html

Key Concepts for assessing claims about treatment effects

A website of key concepts people need to understand to be able to assess claims about the effects of treatments.

Testing Treatments international

https://en.testingtreatments.org/key-concepts-for-assessing-claims-abou…
Know the Science * Tools to help you better understand complex scientific topics that relate to health research National Institutes of Health | US https://nccih.nih.gov/health/know-science
Knowledge Nudge Blog A blog about patient-oriented research. Manitoba SUPPORT Unit https://medium.com/knowledgenudge
Making Sense of Medical Research Studies A webpage about health research. Canadian Women's Health Network http://www.cwhn.ca/node/40799
Methodology 101:Training For Patients and Stakeholders  A training booklet about health research at PCORI. PCORI (Patient Centered Outcomes Research Institute | US https://www.pcori.org/sites/default/files/PCORI-Methodology-101-Trainin…

Patient Engagement in Health Research: A How-to Guide for Patients

Guidebook for patients interested in getting involved in health research

Alberta SPOR SUPPORT Unit

https://albertainnovates.ca/wp-content/uploads/2018/06/How-To-Guide-Patient-Version-8.0-May-2018.pdf

Patient-Oriented Research in Child Health  Online training modules to learn about pediatric patient-oriented research. Canadian Child Health Clinician Scientist Program http://cchcsp.ca/index.php/curriculum/porcch/

Patient-Oriented Research Training and Learning – Primary Health Care (PORTL-PHC) *

Online training modules to learn about patient-oriented research. PORTL-PHC is an Ontario SPOR SUPPORT Unit-funded initiative and was developed with the support of INSPIRE-PHC, CRaNHR and the Patient Engagement Resource Centre. https://bcsupportunit.ca/resources/patient-oriented-research-training-a…
Patient & Public Engagement: Beginner Level Aging, Community and Health Research Unit McMaster University

https://achru.mcmaster.ca/patient-public-engagement-other-resources/beg…

Patient & Public Engagement: 

Intermediate level

Aging, Community and Health Research Unit McMaster University

https://achru.mcmaster.ca/patient-public-engagement-other-resources/int…

Patient & Public Engagement: 

Advanced level

Aging, Community and Health Research Unit McMaster University

https://achru.mcmaster.ca/patient-public-engagement-other-resources/adv…

Public Co-Applicants in Research – guidance on roles and responsibilities * A document to help understand what's needed for the public and researchers to work together INVOLVE | UK

https://www.invo.org.uk/posttypepublication/public-co-applicants-in-research-guidance-on-roles-and-responsibilities/

Public Information Pack Documents to learn about health research. INVOLVE | UK https://www.invo.org.uk/posttypepublication/public-information-pack-pip…

Quality Improvement vs Research

Webpage explaining the difference between QI and Research Children's Hospital of Philadelphia Research Institute https://irb.research.chop.edu/
Training on Research Processes * Online training modules about health research. Canadian Depression Research and Intervention Network http://cdrin.org/lived-experience/
Understanding Health Research * A comprehensive website explaining health research. University of Glasgow | UK www.understandinghealthresearch.org

Understanding Medical Research

A collection of resources about health research. National Library of Medicine | US https://medlineplus.gov/understandingmedicalresearch.html

What Patients and Families Need to Know

A collection of resources about patient-oriented research. Ontario SUPPORT Unit http://ossu.ca/training/masterclass/what-patients-and-families-need-to-…
Who, me? Yes, you! Becoming a Patient Partner in Health Research  A video explaining how patients can get involved in patient-oriented research. BC SUPPORT Unit https://bcsupportunit.ca/about/resources/webinar-recordings-learning-re…

* Recommended if you're looking for comprehensive learning resources.