9 Steps To Successful Co-Creation Of Patient-Friendly Health Materials

For several decades, the concept of co-creation has been integral to a variety of industries. As defined by Wikipedia, “co-creation, in the context of a business, refers to a product or service design process in which input from consumers plays a central role from beginning to end.”

While co-creation has gained momentum in business, its adoption by the healthcare industry has been slower. Patients have traditionally been thought of as passive recipients of healthcare services, but a growing demand from today's engaged patients to collaborate with industry in designing patient-centric solutions is shifting the focus towards co-creation.

Over the last few years, co-creation has become an industry buzzword, a catch-all phrase that sits alongside other terms such as patient engagement, patient-centricity, and patient experience. The danger with using buzzwords is that we become so accustomed to hearing them, we don’t often stop to consider what they truly mean. We’ve all come across companies who are convinced that they’ve worked with patients to co-create patient-centric products when in reality, all they have done is show their finished product to a group of patients for their seal of approval. 

This is not co-creation. 

True co-creation goes beyond consultation to participatory engagement in the design process.  It strives for genuine and meaningful interaction, treating patients as partners throughout the entire process and not simply as a focus group used for feedback at the end.

3 reasons to co-create with patients

  1. First and foremost patients are ‘experts by experience’. While healthcare professionals are recognised as experts in therapy areas, patients are experts in living every day with a disease. They bring the weight of this expertise to bear on co-created projects.
  2. People living with medical conditions want to hear from others like themselves in ways they can understand. They trust hearing ‘the same voice’ as theirs. Co-creating materials with patients will ensure patient-friendly language is used and help you to avoid pitfalls such as providing information that is irrelevant or difficult to understand.
  3. A partner in co-creation is a partner in distribution. Patients who help you co-create materials will be eager to get the end product into the hands of their communities.

The important role of patient information and support materials

Materials ranging from information leaflets and patient support websites to clinical decision aids and informed consent forms, whether in print or digital format continue to be an important tool in healthcare.  Well presented, accurate and simple to understand information empowers patients with the knowledge, and confidence to take an active role in their health and wellbeing. By sharing the information with friends and family, their loved ones can also take a more active role in supporting the patient.

How to successfully undertake a co-creation project

A co-creation project needs to be carefully planned, with clearly defined objectives, outputs and processes in place.  Here is the 9 step-process we employ at merakoi to ensure the successful completion of client-patient co-created projects. 

1. Establish objectives and desired outputs

We begin by discussing with the client what the proposed project hopes to achieve. Who are the patients they want to reach? What are the primary benefits to them (and to the client)?

2. Identify patient co-creators

The next step is to identify patient experts with whom we can collaborate to achieve the defined objectives. Who best represents the target patient demographic? Who has the perspectives, knowledge, and skills to assist in co-creating the material?  

3. Recruit patient experts

One of the most time-consuming phases in a co-creation activity is the identification and recruitment of patient experts.  At merakoi we have access to a global network of patient experts, ensuring a diverse range of perspectives. Traditionally, industry has sought input from patient organisations, but companies are increasingly seeking a broader level of patient expertise.  This is why we continue to expand our network of patient experts in over 50 disease areas (including MS, Cancer, Heart Failure, Atopic Dermatitis, Pulmonary Hypertension, and IBD) across the globe.

Once we’ve identified our ideal patient experts, we begin the recruitment phase of the project. When a patient expert agrees to come on board, we handle the contracting process. The contract should clearly outline the project’s objectives, the expectations of the role, the nature of the activities, the agreed-upon remuneration, and the time commitment required to be involved.   In this initial phase of the project, we invest time onboarding the patient experts, taking time to individually show them the merakoi-way of working, our tools, providing training on compliance and adverse event reporting - just as we would onboard any consultant working with us. 

4. Planning the co-creation activity

When working with patients it’s important to be adaptable and responsive to their needs so that each participant can contribute fully.  At the time of writing, you will most likely be running a session virtually. This has the advantage of broadening participation beyond geographical boundaries, as well as making it easier to include people with disabilities or those who are too unwell to travel. When the time comes for meetings to resume face to face, consider how this may exclude some participants. Plan for hybrid meetings with a mix of virtual and in-person activities in the future. 

Other factors to consider include the format of the activity - one-to-one sessions, focus groups, or a mix of both -   the planning of breakout sessions,  preparation of pre-reading material, and so on. 

5. Running the co-creation activity

Following a client kick-off meeting to align on objectives and key milestones, we introduce the patient experts to the client and begin building the foundation of this collaboration. The co-creation starts by gaining a deep understanding of the patient’s needs then translating this into a meaningful co-created solution that will truly resonate with patients. Patient experts are involved in focus groups and brainstorming sessions to define the value proposition and the content strategy, and are guided through producing authentic content pieces in multiple digital formats, ready for usage on social media and digital platforms.

6.  Post Activity

Co-creation doesn’t end when the session comes to a close. It is an iterative process that entails keeping patient experts updated on progress and seeking additional input from them. The best way to learn and improve is to incorporate feedback from the working team, particularly from patients who have been involved. One of the most common frustrations patients express when working with companies is that they never hear how (or even if) their feedback has contributed to the final product.  Ongoing communication with patients is critical to the success of a  co-creation project. 

7. Measure Impact/ROI

When the project is finished, we send out a survey to the patient experts and clients to get feedback on how the process went for them. We see this as an important opportunity to build a relationship of trust and accountability with our experts.  We have also run this as a retrospective focus group session employing the 4L’s framework (Liked, Learned, Lacked, Longed For).

Challenges to co-creation

While we are passionate champions of co-creation at merakoi, we recognise that successfully implementing a co-created project can present some challenges for clients at times.

Some of the most common challenges we have encountered include:

  • Fears around compliance
  • A risk of tokenistic engagement 
  • Involving patients too late
  • Lack of access to the right patients
  • Tight timelines for projects
  • Lack of resources to engage with patients
  • Lack of process / know-how to engage with patients 

How to overcome challenges

From our experience, we have found the following helps in overcoming the aforementioned challenges:

  • Involve patients early. We cannot emphasise this enough. Waiting until you have a finished product to give to patients for review is too late for meaningful input.  
  • Allow more time for co-created projects.  Yes, this will take longer, but taking the time will pay off. You must balance this against the real possibility of producing an end product that is not relevant to patients.
  • Ensure the right mix of patient expertise is at the table.
  • Fears around compliance. Becoming acquainted with industry regulations is the best way to overcome this challenge. 
  • Build trust with patients and spend time with them to align on how you want to work together. This means investing in resources that dedicate time in coordinating the patient engagement activities.
  • Before engaging in activities with patients, define internally how you want to work with them and create briefing documents to explain what is expected from them and how you will work together. This will help setting expectations and clear goals.

Key Takeaways

Let’s conclude with some key takeaways. 

  • Enter the process free of preconceived ideas and assumptions- be open to the process and what patients bring to it.
  • Maintain flexibility - don’t be surprised if the process takes you in a direction you weren’t expecting. 
  • Be considerate of the fact that you may be working with people whose time and capacity may be limited by their condition.
  • Use professional facilitators to manage activities. Neutral facilitators should facilitate a fair and open engagement process, thereby reducing the risk of bias.

At merakoi we thrive to create successful patient engagement.  We believe we are stronger together.  If you have any questions on how best to work with patients to create meaningful solutions, get in touch!

Book a consultation to talk to us about collaborating with patient experts on your project.

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