“nothing about me without me!” patient participation in...

“Nothing about me without

me!”

Patient participation in

healthcare redesignJune, 2014

Margot Wilson, RN, MSN Director, Chronic Disease Management Strategy

Providence Health Care

Delia Cooper Patient Representative

Patient Voices Network

BackgroundJoint partnership between Providence Health Care and the Shared Care

Committee, in collaboration with Vancouver Coastal Health

Mission to improve care for patients with complex chronic conditions by:

• Simplifying the patient journey

• Improving outcomes

• Reducing costs

• Strengthening relationships

Focus Groups

•Family physicians

•Specialists

•Patients

Need for improved

•Communication

•Access to specialists

•Collaboration and relationships

Context

A Force to be Reckoned With

ImportantPowerfulMust not be ignored

Starting out

• Will it change the dynamic?

• Where will we find the patients?

• Will the patient voice be heard?

• What are our expectations of the patient

representatives?

IPAC/Deloitte Public Sector Leadership Award

Added Value

Understanding what is really important to the patient

• Ability to book appointments directly with specialist

• What patients want to be accountable for in their health

care journey

• What is important for the specialty area to know about

the patient before they arrive

Ability to change practice immediately

Rapid Access to Consultative Expertise

•Telephone advice line for family physicians and Nurse

Practitioners

Notification of Family Physician•On admission to hospital

Impact on Change

What we have learned

Principles

• Include patients from the beginning

• Include patients as full team members

• Set out ground rules at start of meeting

• Include more than one patient for support

• Ensure clear expectations from both sides

• Use a facilitator

• Keeps conversation on track

• Ensures all voices are heard

• Ensure follow through on suggestions to the best extent you can

• Give regular updates on progress

• Do a process evaluation after a few meetings to get feedback on how

things are going.

Logistics

• Provide instructions to get to the meeting room

• Provide refreshments and food (with travel time it could be several

hours)

• When providing food – check for allergies – patients might have

some restrictions

• Consider the timing of meetings to avoid rush hour

• Provide parking

• Provide reimbursement for all costs

• Use of flip charts for keeping the points visible

Feedback from a patient representative

“Just having us in the room makes

everyone aware of the focus of it, not

just the duties and administration, but

more about what is best for the patient.”

PVN Patient Representative

Excellence in Quality Award 2013

Levels of Patient Participation and Engagement

• Individual

• Organizational

• System

Patient and Family Engagement at the Organizational

Level

Importance of Patient Participation at the Organizational Level and in

the Patient as Partners|Patient Voices Network

For Patients:

• Positive contribution

• Greater understanding

• Problem-solving in setting where real

change is possible

• Opinions are considered in focus

groups and surveys

• Educational experiences – Webinars or

Conferences

• Briefing and debriefing teleconferences

are enlightening

• Stimulating and gratifying experience

For the Health Care System:

• Includes all stakeholders in

change process

• Patient-centered perspective

• No vested interests

• Greater harmony in problem

solving process

• Expedience frequently a priority

• Cost effective

Importance of Patient Participation at the Organizational Level and in

the Patient as Partners|Patient Voices Network

Successes in the Shared Care Program from the Patient Perspective

Communication in all areas:

• Referrals to specialists

• Clarity for patients

• Consults

• Support for complex chronic diseases (RACE)

• System acknowledgement of patient realities

• Hospital communications

Highlights from the Patient Perspective

• Canadian Medical Association’s Multi-stakeholder Summit – “The

Referral and Consultation Process” - Ottawa, December, 2011

• Health Council of Canada’s National Symposium – “Advancing

Integrated Health Care: Practices that Work” – Toronto, October,

2012

• Shared Care Partners for Patients – “Collaboration in Action:

Showcasing Shared Care in BC” – Vancouver, October, 2012

• Institute for Healthcare Improvement Forum – “Defining

Moments” – Orlando, Florida, December, 2012

• National Health Leaders Conference – 2012, 2013 presentations

• Ethel Johns Research Nursing Forum – “Minding the Gap” –

Vancouver, February, 2013

Patients as Partners|Patient Voices Network and the

Shared Care Program

Learnings from the Patient Perspective:

•Patient as Partners|Patient Voices Network

- tremendous background support

- briefings, debriefings

- participation only to the level that the patient is

comfortable

• Shared Care Committee

- welcoming

- appreciative

- very supportive

- exciting opportunities

System Redesign Engagement Practice Support Programs

Patient and Family Participation

PVN Videos

• The patient perspectivehttp://www.youtube.com/watch?v=QiHFLKGHL9w

• The healthcare provider perspectivehttp://www.youtube.com/watch?v=uxTNnkWlqys

What are people are saying?

Questions

Margot Wilsonmwilson@providencehealth.bc.ca