Table 1 Map of potential versus reported impacts of patient research engagement by PREFER case study^a

I. Better quality research

1. Research quality and research process: enhanced credibility and improved research

X

X

X

X

X

–

X

X

2. New funding and funding opportunities: patient contributed to research proposal

–

–

–

–

–

–

–

X

3. Research questions (e.g., which treatment attributes to assess), hypotheses, interventions and medical technologies become more relevant/usable for patients

X

X

X

X

X

–

X

X

4. Research design, methods and study procedures become more appropriate, sensitive and/or ethically acceptable

X

X

X

X

X

–

X

X

5. Recruitment, accrual rates, and retention improvements

X

–

X

X

X

X

–

X

6. Representativeness/diversity of research subjects (i.e., inclusion of more hard-to-reach patients)

–

–

X

–

X

–

–

–

7. Data collection procedures and data quality changes

X

X

X

X

X

–

X

X

8. Intervention and/or survey implementation by patients

–

X (piloting)

–

–

X (piloting)

–

X (piloting)

X (pretesting)

9. Data analysis and/or results interpretation by patients

–

–

X

X

–

X

X

X

10. Researchers' knowledge and capacity increases

–

–

–

–

X

–

–

–

11. Changes in researchers' attitudes about the value of the patient perspective

–

–

–

–

X

–

–

–

12. More useful evidence for clinical and health policy decisionmaking

–

–

–

–

X

–

–

–

13. More relevant evidence for entire spectrum of patients with targeted disease condition

–

–

–

–

X

–

–

–

14. Changes to health outcomes, including overall population health, morbidity and mortality

–

–

–

–

–

–

–

–

II. Other impacts

–

–

–

–

–

–

–

–

1. Patient empowerment

 (a) Patient or community research knowledge, skills and capacity

 (b) Knowledge of community needs (empathy), services available, motivation to help community (citizenship literacy)

–

–

–

–

X (a and b)

–

–

–

2. Increased translation, dissemination and uptake of results via improved dissemination to patients and the community

–

X

–

X

X

X

–

X

3. Democracy and accountability

 (a) Transparency

 (b) Legitimacy

 (c) Accountability

 (d) Public trust in public institutions

–

(a) X (lay language summary)

–

(a) X (lay language summary)

(a) X (lay language summary)

(a) X (lay language summary)

–

(a) X (lay language summary)

4. Moral obligation

 (a) Fairness

 (b) Respect and trust between researchers and engaged stakeholders

 (c) More ethically acceptable research

–

–

–

–

(a, b, c) X

–

–

–

 Total # of types of impacts reported

5

7

7

8

15

4

6

10