Nothing about us without us

by

vchBy Sandra Bodenhamer

I believe in the philosophy “nothing about us without us” – in other words, people who are affected by policies should be involved in making decisions about those policies, especially when it impacts their health. That is why I chose to do my Master’s of Public Health practicum placement with Vancouver Coastal Health’s (VCH’s) Community Engagement (CE) Department (http://www.vch.ca/ce). This unique department has the mandate of bringing the voice of patients and the public to VCH decision-making.

My practicum project was to the placement of patient or public advisors on VCH working groups. CE had seen a sharp increase in requests for advisors (currently 46 advisors on 30 workings groups), and they wanted to get perspectives from both advisors and project leads on the benefits, challenges, impacts and potential areas for improvement in the advisory process. From May – June 2015 I interviewed 20 advisors and 17 projects leads.

Patient/Public Advisor feedback

The majority of advisor had overall positive experiences and were extremely grateful that their voices were being considered in healthcare planning. They noted several common factors that lead to positive or negative experiences.

Positive Influences Negative Influences
§  Staff has experience working with advisors §  Staff not understanding advisor role
§  Being involved from the beginning stages §  Involving advisors after committee is established
§  Being treated as an equal §  Staff resistance to advisor input
§  Support from the VCH staff

§  Face-time

 §  Frequent changes in committee structure
§  Good communication

 

 §  Poor communication

§  Excessive use of jargon
§  Recognition/reimbursement

 

 §  Being treated as less important than others
§  Progression in a reasonable timeframe §  Lack of progression on issues
§  Advisor’s ability impact decision making

 

 §  Lack of ability to influence decisions

§  Highly technical focus of the committee

Committee Chair and Staff Feedback

An overwhelming 94% of committee chairs and staff would recommend a patient/public advisor to a colleague based on their current experience. However, they also noted some common challenges listed below.

Challenges of working with advisors:

  • Advisor focused on individual experience rather than the big picture
  • Inadequate orientation for the advisor
  • Advisor didn’t represent the target population
  • Need for further staff training around engagement
  • Scheduling conflicts

Value Added from the Advisors’ Participation

Advisors and committee chairs had slightly different views on impacts advisors made, as summarized below.

Advisor contributions per staff Advisor contributions per advisors
·      Keeping the focus patient-centered ·      Development of effective resources
·      Increasing knowledge translation ·      Thoughtful recommendations
·      Decreasing use of jargon ·      Information sharing (within the committee, to other VCH staff and in the broader community)
·      Positive influence on building design ·      Raising new issues that staff were not aware of
·      Positive influence on hiring practice (including advisors on hiring panels) ·      Representing the patient/public voice

 
·      Inspiring innovation
·      Increasing accountability

 

3 committee chairs and 1 advisor said that the advisor made no concrete impact, due to a lack of ability to engage the advisor, as well as the very technical clinical nature of some committees.

Lessons Learned

1). There is no cookie cutter formula for placing advisors – The strategy for each advisor placement must reflect the unique needs of the initiative.

2) Satisfaction generally increases as the advisor and committee get more experience working together – Working with an advisor is not always a smooth process, but their involvement often causes greater innovation and outcomes that better meet the patient/public needs.

3) The first few meetings are critical in creating a positive experience for advisors and committee members – Orienting advisors about the committee, promoting understanding of the advisor’s role, and offering increased support in the early stages is key.

These insights are being reflected in the creation of a resource for staff considering working with patient and public advisors.

Conclusion

Including patient and public advisors on VCH initiatives has been very valuable to the organization. Advisors and committee chairs both noted that one of the greatest benefits of working together is a culture shift towards people-centred care.

Get involved!

If you are interested in becoming a patient/public advisor for VCH please visit the Community Engagement Advisory Network webpage at: CEAN. If you live in BC but outside the Vancouver Coastal region you contact the Patients Voices Network at: https://www.patientsaspartners.ca/network

If you are a practitioner that is interested in promoting a culture of community engagement at your workplace, you may consider joining the National Healthcare Engagement Network (NHEN). Contact Belinda Boyd, Community Engagement Leader, VCH (Belinda.boyd@vch.ca).

References:

Bodenhamer, S (2015). Patient and Public Advisor Process Evaluation     Summary. Vancouver Coastal Health.

Vancouver Coastal Health. Community Engagement. Accessed at:          http://www.vch.ca/get-involved/community-engagement/