Embracing Co-Creation to Better Connect

Contributed by:

Dan Bobear, Principle and Managing Director, The Patient Experience Project

NOTE: The content below contains the first few paragraphs of the printed article and the titles of the sidebars and boxes, if applicable.

Many patient and caregiver campaigns fail to resonate with their intended audiences. Innovative collaboration methods and co-creation with patients and caregivers can add authenticity to communications and elevate brands.

Do you remember the telephone game when you were a kid? One person starts the game by whispering a short message into the ear of the person sitting to their right and so on and so on. By the time the message reaches the kid at the end of the line, the message was almost always quite different. Too often the creation of patient programs and content resembles a game of telephone:

  • First it typically starts with the client sitting behind two-way glass watching as a structured interview is conducted.
  • Then the findings are vetted by the market research vendor; delivered to the client market research staff; interpreted by the brand team; communicated to the agency; and issued to a creative team for copy and layout development.
  • Next it is sent to the client; reviewed; revised; sent to medical-legal-regulatory review; and so on and so on.

Is it any wonder that the final result is so disconnected from the patients it is meant to serve? There is a better way: co-creation. Bringing patients in early and involving them every step of the way by establishing co-creation forums leads to the development of programs and content that have a real impact.

The 10 Principles of Co-creation

  1. Embrace the power of the patient. Patients are inherently more interested in the words of wisdom that come from other patients. In fact, one in four people have read or watched another’s experience with a similar illness online, according to 2013 data from Pew Research Center. By helping patients to connect with others, everyone wins.
  2. Walk a mile in their shoes. Knowledge is important, but real insight is enlightening. Get out from behind the two-way mirror to gain a profound understanding. Immerse yourself into their worlds through ethnographic research, social media listening, and behavioral research to create a solid foundation for your co-creation forums.
  3. Inspire participation. While many patients and caregivers want to pay it forward, others need to know what’s in it for them. Regardless of their motivations, inspire patients and caregivers to put themselves out there and to get involved with your team.
  4. Form a diverse group. Engage patients and caregivers with different backgrounds (e.g., ethnic, gender, age, socioeconomic status, disease severity, etc.). If your team is all the same, then your ideas will be uninspired. Branch out and experience the benefits of discussion and debate.
  5. Be purposeful. While it’s great to be open-minded and creative, start with the end in mind and look for creative ways to solve specific problems. Knowing what you are trying to achieve allows you to more effectively harness the power of co-creation.
  6. Make sure everyone checks their ego at the door. The best ideas often build off of the ideas of others. Make sure the group uses “yes, and” statements, not “yes, but” statements. Adopt this practice and everyone will leave feeling that they were an integral part of the process.
  7. Create real connections. Many patients and caregivers with rare, complex chronic diseases feel isolated and alone. As pharma marketers, we’re outfitted with all of the resources to facilitate the interpersonal ­connections they crave — so make it happen.
  8. Feel the difference. If your marketing practices aren’t making you feel like you’re genuinely connected to the populations you serve, then you’re doing it wrong. Co-creation breeds empathy and helps both patients and drug companies appreciate each other’s contribution to improving the patient experience.
  9. Accept reality. We work in a highly ­regulated industry. The good news is that co-creation is by its nature compliant as it is authentic, genuine, and true. Involve your legal and regulatory teams early on and they will see the value of including the patient every step of the way. They will also appreciate the fact that co-creation and listening to the patient voice are aligned with one of the FDA’s current priorities: the FDA is actively seeking patients’ perspective on certain diseases and their treatments through its Patient-Focused Drug Development (PFDD) program.
  10. Like fine wine, co-creation teams often get better with time. Co-creation is not a “once and done” exercise, it is an ongoing process that drives tremendous engagement and amazing business results. Form long-term relationships with patients and caregivers to get insights and to develop content and programs that get better as the team gets smarter.


The Patient Experience Project is a patient-centric communications agency committed to collaborating with patients and caregivers to develop an in-depth understanding of the patient experience and to co-create high- impact programs and content.

For more information, visit the-pep.com.

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