eReferral CoP Session #8

On April 9, 2026, the eReferral Community of Practice (CoP) convened to explore the role of patient advisors in eReferral and to examine how patient perspectives can meaningfully shape referral design, implementation, and ongoing improvement.

Insights

The discussion highlighted the following themes that collectively define what a strong, patient-centred eReferral experience should look like.

Meaningful Patient Inclusion Is Foundational — Not Optional

Participants emphasized that patient engagement must occur early and consistently, rather than as late-stage validation. Patients described the difference between being consulted and being genuinely involved in shaping decisions that affect their care.

• Meaningful engagement requires co-design, not token representation
• Patient participation must have real influence on outcomes, not symbolic presence
• Compensation and respect for patient expertise were highlighted as signals of authentic partnership
  
  
  “Inclusion without influence is extraction.” (Patient Advisor)

Clarity, Transparency, and Communication Are Core Patient Needs

Across discussions, participants aligned on a central issue: once a referral is sent, the system often goes silent. This “black hole” creates anxiety for patients and added burden for clinicians. Participants highlighted the need for:

• Clear confirmation that a referral was sent and received
• Ongoing status updates (accepted, declined, scheduled)
• Defined expectations around timelines and next steps
  
  “A referral isn’t just a form — it’s a moment of uncertainty where patients need the most clarity.” (Patient Advisor)

Designing for a Spectrum of Patient Activation

The group emphasized that patients engage differently with their care, based on comfort with technology, digital literacy, access, and personal preference. Rather than creating parallel systems, participants advocated for:

• Flexible eReferral processes that support multiple modes of engagement
• Patient choice in how they receive information (digital, phone, caregiver-supported)
• Equity-focused design so safety and visibility are consistent regardless of how a patient participates

Interoperability Is a Patient Safety Issue

The group reinforced that interoperability is not only a technical challenge but a patient safety imperative. Key challenges discussed included:

• Fax-based and email-based processes that lack real-time feedback loops
• Fragmentation across EMRs, referral platforms, and regional solutions
• Limited visibility for both patients and referring clinicians once a referral leaves primary care

What Defines an Ideal eReferral Experience?

Across breakout groups, the strongest shared vision of a “good” referral experience included:

• Patient choice regarding provider, location, and communication channel
• Coordinated information flow so patients are not repeating their story at every step
• Transparency that reduces the need for patients and caregivers to “chase” care
  
  “Ultimately, a great referral experience is one where patients don’t have to manage risk in the system — the system manages it for them.” (Patient Advisor)

Questions?

Have questions? Complete this submission form and a member of the eReferral CoP will respond as soon as possible. Note: Some questions may require discussion and will be presented at a future quarterly eReferral CoP meeting.  

If you are just looking to stay informed on the eReferral CoP meeting topic, an update will be available following each quarterly session.