Co-Creation Guidebook: Introduction

An introduction to co-creation for healthcare teams seeking to implement cancer control and prevention interventions


Cocreation process visual graphic

How to structure the Co-creation groups

  • Include both clinic team members & patient/community representatives, but we strongly recommend separate groups for each.
  • The clinic team should include people with diverse roles representing the key aspects of the project.
  • Ideally, the clinic group will have 5 to 8 members and the patient group 5 to 8 patients (or community members).
  • At minimum the group should have 2 to 3 representatives from both the clinic and patient sides.

What are the potential benefits of Co-creation?

  • It provides a framework to design, plan and continuously improve an intervention.
  • It facilitates communication and cooperation between the clinic team and patients.
  • It leads to more equitable outcomes for patients.
  • This is an early and evolving adaptation of longstanding community-engaged methods of co-design (see References). These approaches have great potential to engage key partners to launch successful innovations.

Tailoring Co-creation to Study Phase

  • Early engagement of clinic teams and patient partners through interviews and/or workshops
  • Identify/refine core goals of the intervention based on partner perspectives
  • Support this phase through internal pilot funding
  • Feedback on early versions of the intervention
  • Input from both clinic teams and patients on workflows to deliver the intervention
  • Support this phase through smaller sources (e.g., R03, R21, R34 or Foundation funding)
  • Ongoing engagement of partners
  • Formal testing of the intervention
  • Support this phase with NIH, PCORI or other funding sources

Exploration Phase

Early engagement of clinic teams and patients through forums that allow for equal exchange of thought, i.e. workshops

Who should be included?

Representatives from:

  • The research team
  • The clinic team
  • The patient / community population

Objectives of this phase

  • Identify the intervention’s core functions
  • Define a value proposition
  • Use a framework to guide the process

Key activities

  • Interviews with clinic team members
  • Interviews with patients

Identify the core functions

Identify the core functions of the intervention (the purposes related to its mechanism of change) that bring value to both the clinic team members and patients. Start by identifying these core functions from the literature and discussions with your research team before presenting this information to your partners. See the Resources section for guidance on Functions and Forms.

Define a value proposition

Before brainstorming core functions or goals, it is often helpful to define a value proposition for clinic teams and for patients, based on the factors that influence implementation success. See the Interview guide and Workshop 1 slide templates in Resources section below for examples.

Use a framework

We suggest one of the following:

Capture a wide array of perspectives

Early on, it is important to identify and engage invested partners from both the clinic team and patients. On the clinic side, include all roles that could touch the intervention, or are needed to sustain it, from the front desk, to medical assistants, support staff, clinicians and clinic leaders.

Adjust your approach to partner meetings. Depending on the type of clinical setting (e.g., primary care and cancer care) you may have between 30 to 60 minutes for each session.

Interview Objectives

When interviewing clinic team members, you want to understand their role on the team, how it relates to other roles and to the bigger picture. You also want to learn what they see as the most important points to focus on and their key challenges. Learn what they do to make the process successful. Interviews with patients are more open ended. You want to learn what they are focused on and concerned about and what they view as a successful outcome.

Planning Phase

Feedback on early prototype versions of the intervention

Who should be included?

Representatives from:

  • The research team
  • The clinic team
  • The patient / community population

Objectives of this phase

Identify and develop:

  • Menu of forms to operationalize the intervention
  • Workflows for delivering the intervention
  • Adaptations to the forms

Key activities

  • Workshops with clinic team members
  • Workshops with patients
  • Workshops with both patients and staff,
    when it makes sense

Operationalize the intervention

The objective is to get partner input on the design and flow of the intervention. Partners co-develop a menu of specific forms and workflows (e.g., steps, procedures, strategies) to operationalize the intervention. A deliverable is a menu of workflows tailored to local contexts and intervention forms aligned to meet each core function.

Workflows for delivery

Convene your partners to co-build each step and process of the workflows. This is a collaboration between:

  • Implementers (the clinic team with participants from all key areas)
  • Patients (the recipients of the intervention, representing the different needs and experiences of the patient population)

When developing the workflows, it is useful to first identify in the clinic/implementers workshop:

  • Existing clinic workflows: a process map works well for this
  • Feasible ways to adapt existing workflows to the new intervention
  • Brainstorming and rating contextual reasons why program would/would not be sustained in 1 year (see Example Workshops 2 and 3 - and the iPRISM resource)
  • After this input from clinic teams, get feedback from patients on options.

Challenges of joint workshops

It can be challenging to include both patients and clinicians in the same workshop.

  • Clinic staff may have limited time availability and need to join for a partial session over lunch or on a break.
  • Clinic staff use a shared jargon, that patients won’t readily understand, and also can specify some feasibility bounds from their on-the-ground perspective.
  • Patients and community members lack the expertise of clinicians and require more explanation of key clinical concepts -- this power differential may intimidate patients from sharing their opinions and experiences with "the experts" in a joint workshop.This lack of expertise can be barrier to patient participation. They may feel intimidated to share their opinions and experiences with “the experts.”

To avoid these issues, we recommend holding separate workshops for clinicians and patients. The facilitator should share the concerns, options and feedback of each group with the other.

The benefit of joint workshops

If you have the luxury of clinic staff and leaders who can participate without interruption, and the facilitator elicits feedback from patients separately from clinicians, it allows these groups to hear from one another directly rather than having the feedback filtered by the facilitator.

Implementation & Sustainment Phase

It’s important to plan for sustainment from the outset, and in the co-creation method, implementation and sustainment are similar processes.

Who should be included?

Representatives from the same groups as in the Planning phase:

  • The research team
  • The clinic team
  • The patient/community population

Objectives of this phase

  • Implement the intervention
  • Engage with partners to:
    1. Problem-solve challenges
    2. Consider how to frame the benefits identified to promote sustainment

Key activities

  • Workshops/meetings with clinic team members
  • Workshops/meetings with patients
  • Alternate ways to engage partners such as periodic brief updates/questions

Ongoing engagement of partners

Commit to engage with partners across the life cycle of the research project. During the implementation phase, this may include periodic advisory board meetings, periodic zoom meetings, monthly one-page updates with questions for partners, or the like. There is no one right way, be creative and develop strategies that work for your situation.

Formal testing of the intervention

Depending on the funding available, testing the intervention may be a pilot-test or a fully-powered trial. If it is a pilot study, it is helpful to work with invested partners and leaders in the implementing organization to identify outcomes to track that may influence sustainment. Additionally, direct patient feedback on their experience is important to understand the intervention effect on that group.

Assessing sustainability

Toward the end of the implementation phase, it is important to begin to plan with partners on ways to sustain the program. Assessing sustainability along the way and reviewing problem areas with partners may be helpful.

Co-creation Resources

Below is a list of our downloadable and supplemental resources available for public use. These resources will require modification to fit the needs of your project.

 

Resources to be adapted for your project

This section contains templates to help you get started. The primary care and oncology clinic examples show completed files based on these templates.

Value Proposition Template
Forms and Functions Fillable Matrix
Workshops
Co-creation Documentation Spreadsheet
Learn More: Additional Co-creation References


Primary Care Examples

Examples from My Own Health Report (MOHR) a website that helps patients identify their health risks and prioritize which risks to address.

Value Proposition Example
Workshops
  • MOHR Workshop PPTs (Zip, 1,806 KB)
    Contains PowerPoint files from the MOHR patient and clinic workshops.

Oncology Clinic Examples

Examples from Integrated and Actionable Aging Assessment (IA3) an intervention to tailor cancer treatment plan based on lifestyle behaviors, geriatric risk factors, and unmet social needs.

Workshops
  • IA3-CP Workshop Files (Zip, 5,567 KB)
    Contains PowerPoint files from the IA3 patient and clinic workshops.
Co-creation Documentation Spreadsheet

Funding

  • P50CA244688 (PI – Glasgow),
  • University of Colorado Cancer Center pilot grants “Engaging Primary Care to more feasibly address primary prevention and patients’ social needs related to cancer” (PI – Huebschmann) and “Pragmatic Approach to Integrating an Actionable Assessment of Key Health Topics into Care of Older Adults with Cancer“ (MPI – Kessler and Glasgow),
  • University of Colorado Cancer Center 3P30CA046934 (Schulick),
  • Center for American Indian and Alaska Native Diabetes Translation Research
    (5P30DK092923-13; Huebschmann: Director of National Resource Core; MPI– Spero Manson and Angela Brega).
  • Patient-Centered Outcomes Research Institute (PCORI) Award Contract SOE- 2022C2-28909 (PI - Perez Jolles)
  • Anschutz Foundation internal grant - Anschutz Acceleration Initiative  (MPI – Glasgow and Matlock)

The opinions expressed in this article are the authors’ own and do not reflect the view of the National Institutes of Health or other funders.

 

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