10.3 Experience-Based Co-Design (EBCD) Methodology & Patient-Staff Discovery

10.3 Experience-Based Co-Design (EBCD) Methodology & Patient-Staff Discovery

Quick Answer: Experience-Based Co-Design (EBCD) is a rigorous, evidence-based participatory action research methodology created in the UK National Health Service (NHS) and formalized by The Point of Care Foundation. EBCD brings patients, family caregivers, and multidisciplinary healthcare staff together as equal co-design partners to redesign healthcare services. Operating through a structured 6-Stage Lifecycle, EBCD uses unscripted filmed patient narratives (Trigger Films) in joint workshops to illuminate emotional touchpoints, flatten clinical hierarchies, and empower small working groups to co-create sustainable improvements.

For Certified Patient Experience Professionals, EBCD represents the pinnacle of patient and family partnership. It moves organizations beyond superficial "patient advisory panels" into authentic, power-sharing co-creation where staff and patient experiences are recognized as deeply intertwined.

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The Philosophy of Co-Design: The Ladder of Citizen Participation

Healthcare organizations often claim to partner with patients, but their methods frequently stall at basic consultation. In experience design, patient engagement exists along a continuum (adapted from Sherry Arnstein's Ladder of Participation):

                  THE CONTINUUM OF PATIENT PARTICIPATION

  LEVEL 5: CO-DESIGN / EMPOWERMENT (EBCD Standard)
  --> Equal power-sharing; joint decision-making; patients and staff co-create
      solutions and lead implementations together.

  LEVEL 4: COLLABORATION / PARTNERSHIP
  --> Patients serve on standing steering committees; active bi-directional dialogue.

  LEVEL 3: INVOLVEMENT / CONSULTATION
  --> Focus groups, surveys, and advisory councils provide feedback on hospital-designed plans.

  LEVEL 2: INFORMATION / EDUCATION
  --> One-way communication; hospital informs patients of policies and operational changes.

  LEVEL 1: TOKENISM / TRANSACTIONAL
  --> Inviting a single patient to an executive meeting without decision-making power.

The Core Premise of EBCD

EBCD recognizes that you cannot separate the patient experience from the staff experience. Frontline healthcare providers who feel unsupported, exhausted, or powerless cannot consistently deliver compassionate, dignified care. By gathering both staff and patient lived experiences in parallel before bringing them together, EBCD validates staff vulnerability and creates a unified moral imperative for change.

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The 6-Stage EBCD Framework

The Point of Care Foundation's standard EBCD framework operates across six systematic stages:

                    THE 6-STAGE EBCD LIFECYCLE

  [ Stage 1: Project Setup & Governance ]
                    |
        +-----------+-----------+
        |                       |
        v                       v
  [ Stage 2: Staff ]     [ Stage 3: Patient ]
  [  Experiences   ]     [  Experiences     ]
  (Interviews/Obs)       (Filmed Narratives)
        |                       |
        +-----------+-----------+
                    |
                    v
  [ Stage 4: Joint Patient-Staff Workshop ]
  (Trigger Film Screening & Touchpoint Prioritization)
                    |
                    v
  [ Stage 5: Co-Design Working Groups ]
  (Small Multidisciplinary Sub-Teams Meeting Over 3-4 Mos)
                    |
                    v
  [ Stage 6: Celebration, Evaluation & Review ]

Detailed Breakdown of the 6 Stages

Stage 1: Setting Up the Project

• Steering Committee: Form an oversight group comprising clinical leaders, operational managers, patient advisors, and project facilitators.
• Scope Definition: Define the clinical pathway (e.g., lung cancer diagnostic pathway, pediatric diabetes transition, emergency room discharge).
• Governance & Ethics: Establish institutional review board (IRB) / ethics determinations and explicit consent protocols for filming and narrative capture.

Stage 2: Gathering Staff Experiences

• Staff Discovery: Conduct 15–20 semi-structured interviews with diverse staff (attending physicians, resident physicians, bedside nurses, medical assistants, ward clerks, environmental services, social workers).
• Observational Shadowing: Project facilitators shadow staff shifts to observe workflow bottlenecks, safety hazards, and moral distress.
• Staff-Only Feedback Event: Staff gather privately to review their aggregated emotional journey map, discuss daily frustrations, and build psychological readiness to hear patient feedback without becoming defensive.

Stage 3: Gathering Patient & Carer Experiences

• Filmed Narrative Interviews: Conduct 12–15 in-depth, unscripted filmed interviews (30–60 minutes each) with patients and carers in their homes or neutral environments.
• Narrative Elicitation: Patients are asked to tell their personal story chronologically ("Tell me about when you first realized something was wrong...").
• Creating the "Trigger Film": Researchers analyze the raw interview transcripts, identify key emotional touchpoints, and edit the footage into a 20-to-30-minute composite film. The Trigger Film highlights both extraordinary care and systemic failures in the authentic voices of patients.
• Patient-Only Feedback Event: Patients review the Trigger Film privately to ensure it accurately reflects their collective voice and prepare for the joint workshop.

Stage 4: The Joint Patient-Staff Workshop

• Shared Screening: Patients, family members, and staff sit together at mixed tables to watch the Trigger Film for the first time.
• Emotional Resonance & Catharsis: The film acts as a neutral, undeniable emotional mirror. Because the film represents multiple patients rather than any single person in the room, staff listen with empathy rather than personal defensiveness.
• Prioritization of Touchpoints: Patients and staff work together to identify 3 to 5 core priorities for improvement (e.g., "Diagnostic Communication," "Waiting Room Anxiety," "Discharge Medication Coordination").

Stage 5: Small Co-Design Working Groups

• Multidisciplinary Action Teams: For each prioritized touchpoint, a dedicated working group forms—consisting of 3–5 patients/carers and 3–5 staff members.
• Sprint Cadence: Groups meet every 2–3 weeks over a 3-to-4-month period to prototype, test, and implement practical solutions (e.g., co-designing a new patient-friendly diagnostic handbook, restructuring bedside rounds, or installing acoustic privacy partitions).

Stage 6: Celebration, Evaluation & Review

• Celebration Event: The entire clinical service line, executive sponsors, and all participating patients reconvene to celebrate implemented changes.
• Outcome Evaluation: Assess clinical metrics, staff burnout/engagement scores, CAHPS ratings, and qualitative sentiment.
• Sustainability: Embed co-design practices into standard operational governance.

Accelerated Experience-Based Co-Design (AEBCD)

While traditional EBCD is transformative, producing custom local filmed interviews can be resource-intensive, requiring 9 to 12 months. To overcome these constraints, researchers developed Accelerated Experience-Based Co-Design (AEBCD).

+--------------------------------------------------------------------------------+
|                    FULL EBCD vs. ACCELERATED EBCD (AEBCD)                      |
+--------------------------------------------------------------------------------+
|  FEATURE             | FULL EBCD (Traditional)    | ACCELERATED EBCD (AEBCD)   |
|  ------------------- | -------------------------- | -------------------------- |
|  Timeline            | 9 to 12 months             | 4 to 6 months              |
|  Video Production    | Locally filmed interviews  | Pre-existing archive films |
|                      | with local patients.       | (e.g., DIPEx / national).  |
|  Resource Demand     | High (video production &   | Moderate (focuses budget   |
|                      | local narrative editing).  | on workshop facilitation). |
|  Staff Discovery     | Conducted locally.         | Conducted locally.         |
|  Joint Workshops &   | Identical rigor; local     | Identical rigor; local     |
|  Co-Design Sprints   | patients and staff.        | patients and staff.        |
+--------------------------------------------------------------------------------+

How AEBCD Works in Practice

• National Qualitative Archives: AEBCD utilizes validated, national qualitative video archives—such as the UK DIPEx (Database of Individual Patient Experiences / Healthtalk.org) or national disease-specific narrative repositories—as the basis for the Trigger Film.
• Local Resonance: Extensive research published in healthcare quality journals demonstrates that watching patients talk about identical clinical conditions (e.g., intensive care recovery, breast cancer chemotherapy) in national archive films triggers the exact same emotional resonance and staff empathy as locally filmed interviews.
• Retaining Local Staff Discovery & Working Groups: AEBCD does not skip local staff interviews or local co-design working groups. It solely accelerates Stage 3, enabling organizations to launch joint working groups months faster.

Power Dynamics & Psychological Safety in Co-Design

Bringing patients and clinical staff into a room together does not automatically create equal partnership. Healthcare is defined by deep, entrenched power imbalances:

• Clinical Hierarchy: White coats, medical jargon, academic titles, and institutional authority make patients feel intimidated, uneducated, or fearful of being judged.
• Patient Vulnerability: Patients may fear that criticizing clinical processes will jeopardize their ongoing medical care or cause retaliation from care teams.
• Staff Defensiveness & Vulnerability: Frontline clinicians, already suffering from moral injury and staffing shortages, may feel attacked, unappreciated, or blamed when hearing critical feedback.

Strategic Facilitation Principles to Flatten Hierarchies

+--------------------------------------------------------------------------------+
|                 EQUALIZING THE PATIENT-STAFF DESIGN PARTNERSHIP                |
+--------------------------------------------------------------------------------+
|  1. DRESS CODE NEUTRALIZATION:                                                 |
|     - Prohibit clinical attire (no white lab coats, scrubs, stethoscopes, or   |
|       executive business suits). Everyone dresses in casual, everyday clothes. |
|                                                                                |
|  2. FIRST-NAME NOMENCLATURE:                                                   |
|     - Strip all professional credentials from name tags (no 'Dr. Smith' or     |
|       'Chief Nursing Officer Johnson'). Everyone uses first names exclusively. |
|                                                                                |
|  3. NEUTRAL PHYSICAL VENUE:                                                    |
|     - Host workshops outside the clinical ward (e.g., community library,       |
|       university conference center, or hotel) to eliminate home-turf advantage.|
|                                                                                |
|  4. PRE-WORKSHOP PATIENT EMPOWERMENT BRIEFINGS:                                |
|     - Conduct orientation sessions with patient participants beforehand to     |
|       validate their expertise, establish peer buddies, and build confidence.  |
|                                                                                |
|  5. FACILITATED PSYCHOLOGICAL SAFETY GROUND RULES:                             |
|     - Establish clear working norms: 'Lived experience is equal in value to     |
|       clinical expertise'; 'We attack broken processes, not individual people.'|
+--------------------------------------------------------------------------------+

Exam Tip: On the CPXP exam, remember that successful co-design requires active leveling of power dynamics. Simply inviting patients to a clinical conference room where physicians wear lab coats and use medical abbreviations results in tokenism, not co-design.