Patient Representative Guide - Opioid

This resource is for patients, family members and/or caregivers who have been asked to engage and partner with primary care clinics or Primary Care Networks (PCNs) to be a part of the opioid process improvement team. It will also help the PCN when including a patient representative in planning new services or approaches.

Patient Representative Goals

Patients and patient advocates should have a voice in all stages of the initiative. Patient representatives should be supported and prepared for each engagement, and have full opportunity to contribute as part of any team, working group or committee. 

Role of PCN Patient Representatives

Because of the perspective of patients, each brings unique value to the opioid process improvement work. Each is an expert in his/her own right, and will contribute fully from that position.

The patient representative will provide guidance and contribute to the success of the clinical opioid improvement objectives. This is accomplished by being an equal partner in the work, and participating in development, internal planning, and implementation processes as appropriate.

A short list of ways for patient representatives to be effective in the role:

• Be honest with your perspective and opinions about the topics, subjects, and situations
• Be available, and honour commitments
• Be open-minded
• Ask questions, and expect to answer questions from others about your perspective*
• Accept your role
• Speak from your own experience and be willing to take on another perspective to gain understanding
• Contribute to the vision of success as well as the progress toward it
• Get comfortable educating others about your perspective
• Be a willing partner to staff, clinicians, and other patients and family members, including helping to set goals for the role
• Be a willing partner with your key clinical or PCN contact(s)
• Take responsibility for learning
• Tell your own story, or be clear that you are telling someone else’s if that is the case
• Plan for the points you want to make, and work at making them clear for others
• Offer suggestions for how things could be improved if they didn’t go well
• Ask for help and use the supports available to you
• Take risks
• Practice self-care, and if you’ve over committed, share some responsibilities and take a break if needed
• Appreciate that you don’t speak for all patients and that other patients will have different experiences and different perspectives.

List adapted from, Tips for How to be an Effective Patient or Family Advisor: A Beginning List, Institute for Patient and Family-Centered Care, 2010

*Your questions will help everyone learn. If you do not understand something, ask questions to help with understanding. If something does not seem right, lead with your questions to help clarify, or to address the issues that could stop things from moving forward. It can be intimidating to answer questions from health care “experts”, but understanding that your wisdom and expertise as a patient, family member, or caregiver is required for the best result.

Some tips for the clinic or PCN that may help with engaging patient representatives:

• When recruiting a patient representative, think about the experiences and/or expertise that you are looking for. Sometimes those with specific experiences are limited in their ability to provide innovative input; other times, a patient with a particular experience may be of most value to your planning team. Be open to anyone interested in participating regardless of specific experience.
• Name one individual for the patient representatives to connect with and provide phone/email addresses.
• Plan to have telephone (or other) conversations before and after the full team meetings between the person named above and the patient representative to help explain new processes, terminology and hear feedback from their perspective.
• Advise other members of the clinic or PCN about the patient representative(s) and what their function is so that the patient representative position is fully understood and utilized by everyone.
• Provide a list of common terms (and all the acronyms we use!) and plan to review this with the patient representatives.