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 | Department of Health and Human Service | US | 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/ |
| Evidence Essentials | Free online resource offering an introduction to health evidence, and how to use it to make informed health choices. |
Cochrane Training |
https://training.cochrane.org/ |
| 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 |
| Getting Access to Paywalled Papers | A blog that explains there are things that anyone can do to more easily access paywalled papers | Holly Witteman, PhD | https://holly.witteman.ca/getting-access-to-paywalled-papers/ |
| Guidance on authorship with and acknowledgement of patient partners in patient-oriented research | A piece from the literature that is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. | Strategy for Patient-Oriented Research Chronic Pain Network | https://researchinvolvement.biomedcentral.com/track/pdf/10.1186/s40900-020-00213-6 |
| 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 | UK | |
| 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… |
|
Including Patient Preferences to Assess the Balance of Benefits and Harms of Treatment Options for People with Multiple Chronic Conditions |
A webpage about health research | Patient-Centered Outcomes Research Institute | US | https://www.pcori.org/research-results/2014/including-patient-preferences-assess-balance-benefits-and-harms-treatment |
| 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 of Patient Review Alongside Traditional Peer Review at a General Medical Journal |
A video about incorporating patient reviews into the traditional peer review process |
Peer Review Congress |
https://www.youtube.com/watch?v=ZAFzvsmD-v8&list=PL6IxO3PNBkC_eemHQI3uY… |
| 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 | Aging, Community and Health Research Unit | McMaster University |
https://achru.mcmaster.ca/patient-public-engagement/other-resources |
| 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 | |
| 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/ |
| Research Fundamentals: Preparing You to Successfully Contribute to Research * | Free comprehensive training offers different ways to learn about the health research process and be involved in patient-centered outcomes research | PCORI (Patient Centered Outcomes Research Institute | US | https://www.pcori.org/engagement/research-fundamentals |
|
Scientific evidence: what is it and how can we trust it? |
A webpage about health research | The Conversation Canada |
https://theconversation.com/scientific-evidence-what-is-it-and-how-can-… |
| 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 Health Research |
Health Research website |
Understanding Research platform | https://understandingresearch.github.io/index.html |
|
Understanding Medical Research |
A collection of resources about health research. | National Library of Medicine | US | https://medlineplus.gov/understandingmedicalresearch.html |
| What is Health Research? * | Free Massive Open Online Course (MOOC): If you’re interested in health research, this course will help to answer your questions. | University of Leeds & NIHR | UK | https://www.futurelearn.com/courses/what-is-health-research |
|
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.