Patient Oriented Research

Question 1

Traditional Approach to Research

Answer 1

Research topic and method determined prior

Interactions are on researchers terms

Participants seen as data sources

One time monetary compensation

Results published in private journals

Question 2

Patient Oriented Approaches to Research

Answer 2

More patient involvement in researching

Patients involved in every step of research as collaborators

Question 3

Perceived Barriers to the inclusion of Patient Oriented Research

Answer 3

Resource intensive

Patients shifting the research agenda away from original purpose

Lack of supportive infrastructure

Fear of tokenism

Question 4

Arguments for inclusion of persons with lived experience

Answer 4

Development of voice and agenda as collaborators

Feelings of empowerment, value, confidence, life skill

Trust between researcher and patient

higher quality of care in context of research priority setting

higher patient involvement in decision making

Question 5

Possible models of patient engagement

Answer 5

Long-term advisor

Surveys

Interviews

Focus groups