1. Patient-Oriented Research 101
Candace Skrapek
Patient Advisor

2. What is patient-oriented research?
A continuum of research that engages patients as partners:
Focuses on patient-identified priorities and improves patient outcomes
Conducted by multi-disciplinary teams in partnership with relevant stakeholders
Aims to apply the knowledge generated to improve health care systems and practices
Review the definition.
Explain the word multi-disciplinary – patients, families, clinicians, policy-makers and researchers
Reference: SPOR – Patient Engagement Framework

3. “Patient”-Oriented Research
Who are we?

4. Recurrent Idiopathic Pancreatitis Lung Cancer
Patient Experience
Recurrent Idiopathic Pancreatitis Lung Cancer
Sudden and unexpected diagnoses
Potentially life ending
Highly stigmatized…"blame the victim”
Under researched relative to incidence, mortality

5. Fun Patient Facts
Being strong, brave, inspiring, and having a positive attitude does not cure my illness
Access to good and affordable healthcare does…this requires good research
For many in health care and health research…facts, figures and data are king.
For me, feeling truly vulnerable has transformed my life and I do not want to be treated like a number
I need an advocate, an ally and a partner who will listen to my side of the story

7. What does the term "patient” mean?
Current and former patients
Caregivers
Family
Public
Patient support groups
Patient organizations
Community groups
People who have experience with a specific condition, service, or treatment
-All encompassing term
- Encourage everyone to use the term that they feel comfortable with. Ask patients you work with what they wish to be referred to as.

8. Research teams Traditional Research Patient-Oriented Research
Principal Investigator
Researchers
Trainees/ Students
Content Experts (e.g., Clinicians)
Participants (includes patients, communities, etc.)
Principal Investigator
Patients (as team members)
Health system leaders/decision-makers
Researchers
Trainees/ Students
Content Experts (e.g., Clinicians)
Participants (often includes patients, communities, etc.)
POR starts with a change in team structure. With the new partners at the table, the conversations can then shift to being patient oriented. Additional benefits = research questions that reflect the patients needs, health system is engaged and thereby more aware of research which should increase implementation of findings.

9. How are patients engaged in patient-oriented research?
As members of governance committees and councils
Patients are not just there to sit passively. They provide advice but also may do co-design data collection tools, data collection, co-present findings, etc.

10. How are patients engaged in patient-oriented research?
Identifying and prioritising
Research design
Development of the grant proposal
Preparation for execution of study
Data collection
Analysing and interpreting data
Dissemination
Implementation
Monitoring and evaluation
As active members of research teams
Patients are not just there to sit passively. They provide advice but also may do co-design data collection tools, data collection, co-present findings, etc.

11. Why are we interested in patient-oriented research?
Patients are experts in their experience and possess knowledge gained through living with a condition or illness
It is the most effective way to focus research, practice, and policy-making endeavours on what matters to patients
- Patient oriented research is not the only type of research.