Why Patient-Only Journey Mapping Matters

 

 

Journey mapping is used across industries, from retail to health care, to get clarity on the user experience.

When journey mapping patient experiences in health care, it’s important to consider how you’re gathering input. This can happen in focus group sessions, one-on-one with patients, or through surveys. For focus group sessions, keeping the group patient-only (plus caregivers / family) is key to gathering honest, meaningful feedback.

A common question I’m asked when we’re organizing journey mapping sessions is whether we can have providers and patients together in one session because “the providers get so much value from connecting with patients and hearing their experiences.” 

Although this may be true, it changes the purpose of journey mapping. It’s no longer about gathering authentic feedback from the patient to understand the journey, and instead focuses on the providers’ experience of hearing patients. It can also put additional stressors on patients.

Here’s why patient-only dialogue is essential, backed by research in community engagement and focus group best practices:

 

Honest Feedback

Power dynamics are real. When patients, caregivers, and family share their experiences with providers present, they may hold back criticism or important details, whether consciously or unconsciously. This is even more likely when their stories are sensitive, traumatic, or complex. 

In addition, there may be a perception that “negative” feedback will impact the care the patient will receive in future. Even if the project team has selected patients and providers who have no relationship, this is a common concern heard from patients in mixed group settings.

Patient-only sessions create a safer space for patients to speak freely. This results in feedback that is clearer, more detailed, and centred on the most important aspects of improving care.

Below are further resources on focus group best practices:

→ The UBC Focus Group Guide emphasizes the importance of power imbalances and how they impact focus group feedback.

→ Homogeneous groups foster open discussion by creating a sense of safety among people with shared experiences (Urban Institute)

→ Best Practices for Focus Groups highlights that power imbalances will affect focus group feedback. For example, having staff provide feedback on a work environment with managers present will change the nature of the feedback.

→ Focus Groups: Heterogeneity vs. Homogeneity outlines that for sensitive or personal topics, homogeneous groups can create a safer space for sharing.

 

Emotional Labour

If providers are present, patients may take on additional emotional labour when recounting their stories. This can show up in a few different ways:

Self-Censorship to Protect Providers
Patients may soften or withhold criticism to avoid offending or upsetting providers present in the room. This adds pressure, stress, and complexity to sharing feedback, compared to speaking freely in sessions where providers are not present.

Performing Gratitude
Some patients feel compelled to express gratitude for care they’ve received, even if their experience was inadequate or harmful. This performance of gratitude requires additional energy from the patient, and can overshadow critical feedback. 

Reliving Trauma Without Adequate Support
Recounting traumatic or deeply personal experiences in the presence of providers can feel exposing or retraumatizing. Without adequate peer support, patients may feel emotionally drained after recounting their experiences, especially if providers become defensive or dismissive.

 

Peer Support

Navigating your care journey can feel isolating. Patient-only sessions provide an opportunity for people to connect, listen, and validate each other’s experiences. The process of sharing with peers isn’t just about gathering feedback—it can also support healing. Often patients exchange contact info to stay in touch after the session.

 

Centring the Patient Voice

Blended sessions with providers dilutes the patient voice. In some cases, this can even shift decisions about care improvements away from patient priorities. The patient is the only one who experiences the entire care journey, and it’s important to prioritize their voices as the primary source of truth. 

For further reading on why centring the patient voice is important for health system improvement, check out NEJM Catalyst, Empowering Patient Voices, and The Power of Listening to Patient Voices.

 

Indigenous-Led and Designed Sessions

When gathering feedback from Indigenous patients, it’s important this is done in relationship. This means the design of the session should be led by Indigenous facilitators, Elders, and community members, and respect cultural protocols. These processes take time, but it’s necessary for building authentic and long lasting relationships with Indigenous communities.

Given historic and ongoing systemic racism and harm to Indigenous peoples, having Indigenous specific sessions are critical for creating a safe space for sharing. This aligns with Community-Based Participatory Research approaches. The process of gathering feedback and using this information must also adhere to the principles of OCAP (ownership, control, access, and possession). 

For non-Indigenous project teams, Decolonizing Project Management provides a starting place for working in relationship with Indigenous peoples and communities, as does Working Effectively with Indigenous Peoples. See also this recent research paper we were featured in: The Use of Graphic Facilitation to Support Adherence to OCAP® Principles in Research With Indigenous Communities

 

Provider & Blended Sessions

Providers offer valuable perspectives on the care experience. Hosting a separate session for them, informed by patient maps, ensures that the patient voice remains central to the discussion. It’s best to hold the patient session first, so the maps can be reviewed during the provider session.

After gathering all this rich information on what is happening in the journey, many projects shift to priority setting & consensus building (see the James Lind Alliance as an example). Journey mapping is about identifying what happens in the journey. Consensus building sessions bring together patients, providers, and caregivers to decide how we make improvements. In these blended sessions, if authentic feedback has been gathered from patient-only sessions ahead of time, this can used to identify top priorities.

Patient-only journey mapping sessions are a powerful way to gather honest, actionable insights while creating space for connection and healing. By centring the patient voice, respecting cultural protocols, and addressing power dynamics, you’ll ensure that improvements in care reflect the needs and priorities of those who experience it most deeply. Learn more about creating a safe space for journey mapping, and key resources to support patients.