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Consultation

Consultations to support Patient-Oriented Research

We can provide one-off consultations to support a range of patient-oriented research projects. This can include guidance regarding different methodological approaches, helping to identify potential patient partners for your study, advising on resources and providing practical guidance on topics such as compensation or developing terms of reference.

In addition, if the consultation is regarding the identification and recruitment of a patient advisor for your study, we can provide a joint consultation with colleagues from The Ottawa Hospital Patient And Family Advisory Program (PFAP). The TOH PFAP currently retains almost 200 patient advisors who are engaged in a range of clinical areas. Patient advisors from the PFAP are currently engaged in over 50 research projects at TOH.

To request a consultation please complete the OMC Online Service Request Form and select “Engaging patients and stakeholders as partners in research (methods and/or training)

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Training

Training in Patient-Oriented Research

We offer training on a range of patient-oriented research methods, as well as introductory sessions about patient-oriented research and patient engagement. These can be customized to fit your schedule and availability.

We can provide one-off bespoke training sessions as necessary for patient-oriented research projects. In addition, we can provide training on the CIHR Foundations in Patient-Oriented Research as well as training in a number of key areas:

• Patient Oriented Research Basics – including definitions, guiding principles and examples
• Patient Oriented Outcome Measures (PROMS) – including definitions, when and how they should be used, and examples
• How to communicate among stakeholders – key terms, facilitating discussion
• How to find and access a patient advisor – identifying roles, introduction to the TOH Sharepoint site
• Nurturing and sustaining partnerships – building trust and relationships, planning effective meetings
• Evaluating patient engagement – the importance of evaluation, tools and resources, examples

We can also provide patient-oriented methods-specific training including:

• Interviews and focus groups
• Consensus methods, including Delphi surveys
• Questionnaire design
• Making trials more patient-oriented

For more information, or to book a consultation, please contact Dr Stuart Nicholls, OMC SPOR Program Facilitator through the OMC Online Service Request Form

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Resources

The provision of Patient-Oriented Research resources

We have created a number of documents and tools to help you in the design and conduct of your research. We can also facilitate access to additional resources developed to support patient-oriented research, including templates and examples of study materials.

Toolkits

General Toolkit - Involvement of the Public & Patients in Clinical Trials
Bagley H, Short JH, Harman NL, Hickey HR, Gamble CL, Woolfall K, Young B, and Williamson PR (2016). " A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials - a work in progress." Research Involvement and Engagement 2: 15.

Toolkit for Project Leads – Engaging Patients in the Research Process:
Bagley H, Short JH, Harman NL, Hickey HR, Gamble CL, Woolfall K, Young B, and Williamson PR (2016). Engaging Patients in the Research Process [Developed by Can-Solve CKD Network]

Templates

Patient & Public Engagement Planning Template - [Developed by the Newfoundland and Labrador SPOR Support Unit]

Patient Partner Compensation
Budgeting Template (in Excel) - [Developed by the George and Fay Yee Centre for Healthcare Innovation]
Recommendations on Patient Engagement Compensation – [Developed by the SPOR Networks in Chronic Diseases and the PICHI Network (2018)]

Guides

Guide for Participatory Approaches & Engagement Methods for Patients & the Public:
Methods of Patient & Public Engagement: A Guide [Developed by the George and Fay Yee Centre for Healthcare Innovation]

Guide for Ethical Engagement in Health Research (Definitions for building understanding, ethical considerations) Ethical Guidelines for Engaging with Patients as Partners in Health Research [Developed by the Alberta SPOR Support Unit]

Lessons learned for successful Patient Engagement for Quality Improvement Initiatives - Patient Tip Sheet [Developed by Canadin Foundation for Healthcare Improvement (CFHI)] The Ontario SPOR SUPPORT Unit’s Equity Framework

Publications

Hamilton CB, Hoens AM, McQuitty S, McKinnon AM, English K, Backman CL, Azimi T, Khodarahmi N and Li LC (2018). "Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective." PLoS One 13(11): e0206588.

Hamilton CB, Hoens AM, McKinnon AM, McQuitty S, English K, Hawke LD, and Li LC (2021). "Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement". Health Expectations. Epub ahead of print 2021/03/18. DOI: 10.1111/hex.13227.

For more information, or to book a consultation, please contact Dr Stuart Nicholls, OMC SPOR Program Facilitator through the OMC Online Service Request Form

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Research

The conduct of methodological research into Patient-Oriented Research

We also conduct research into the methods of public engagement and patient-oriented research.

Completed work includes a systematic review of the literature to evaluate the prevalence of patient engagement in publish trials.

Ongoing research includes work to understand the impact that patient engagement on researchers and their research, as well work to understand how non-scientist members of Institutional review Boards (IRBs) in the US are identified, recruited, and trained.

Examples of our work, as well as other research into the methods of patient engagement conducted at the Ottawa Hospital Research Institute can be found on our Resources page.

For more information, or to book a consultation, please contact Dr Stuart Nicholls, OMC SPOR Program Facilitator through the OMC Online Service Request Form