Co-production in healthcare means that patients and caregivers can contribute to the patient’s healthcare as partners of their professional providers and community. This collaborative approach to care recognizes clinicians as experts on medical science and patients as experts on their own values and preferences; it even allows for others to be involved such as caregivers, researchers, and advocacy groups. Even though many may give lip service to concepts like patient-centered healthcare and research, co-production provokes a concerted shift away from siloed approaches to problem solving, it is centred around the collaboration and participation of all the stakeholders in healthcare and research “transactions.” The discussion of co-production may stimulate debate on ways of thinking and acting differently about collaboration and participation in healthcare and research. It is not a trivial task to change the culture of healthcare in order to better promote collaboration between patients, clinicians, and others, but such a shift is essential.

To have a valuable co-production team involving the healthcare of individuals, there must be transparency, dialogue, and access to shared data. Co-production of care can ameliorate the delivery of healthcare, not only in face-to-face encounters in which the benefits of working together are obvious, but also in designing systems that can improve patient care and enhance the value by creating new opportunities for clinicians, patients, caregivers, and researchers to work together in meaningful collaboration. Patient advocacy groups and others impacted by this shift should also realize the impact that they can have in the co-production of care—healthcare outcomes are not simply created by healthcareprofessionals but are contingent upon the complex interplay betweenclinicians, patients, and others involved in their care. Optimalhealth outcomes can be improved only through active collaborative partnerships among patients, caregivers, clinicians, and researchers who encourage patients to be more involved with their care, emphasizing that their perspective matters and is integral in developing individualized plans of care.

Who is more aptly positioned to help design the healthcare and research experience than those who are affected by these services? This is the concept that has plagued the industry for years. If a company full of business-minded intellectuals designs the services to be used by others without their input, the product will likely not meet the needs of those it is intending to service. In the building of a technology platform that is focused on the concept of co-production of care for rare disease patients, it is important to listen to patients, caregivers, clinicians, and researchers as they shared their thoughts. Many who are introduced to the value of co-production are skeptical, focusing on issues surrounding the inclusivity and exclusivity of data sharing across ALL stakeholders. They have many questions that they want answers to. Should patients or caregivers really get to see ALL the details documented about them by clinicians? Should clinicians really get to see ALL the information a patient and caregiver document daily? Should researchers get a view into ALL the data and contribute their ongoing analysis so that Patients, Caregivers, and Clinicians can see this in real-time versus waiting a year for a publication? These questions are all relevant and create the needed strain that is important to facilitate conversations dealing with the flow of information and interaction. Just because it has been done one way in the past does not necessarily mean that it is the most productive or the best way for the group to continue into the future. These conversations will hopefully lead us into more equitable relationships and more meaningful forms of participation that lead to knowledge production through genuine collaboration. These same conversations around co-production have led to the creation and facilitation of a platform where all those involved can coalesce.

The concept of co-production in the rare disease space is one that requires iterative review and assessment to make sure the maximum value is constantly being assessed and produced. It is not one stagnant concept, and this is by design. A simple small-scale example of this can be seen when a clinician is setting goals for a patient during an assessment. The clinicianmay want the patient to achieve certain milestones over a certain period of time related to movement. However, the patient or caregiver may want to strive for a different set of goals because of different factors the clinician may be unawareof. Co-production of care is about having input into the plan and having transparency about the path no matter what roleyou may have in the process; it is about being willing to adjustthe steps or even the overall goals based on the contributing assets that all parties bring to the collaborative care of the patient.

Governance needs to be in place for this to work successfully and productively. Whilst the concept of co-production can be very fluid and dynamic, governance will assure everyone is on the same page and will decrease any potential chaos. It is important that everyone involved knows how communication and information flows and that they adhere to these standards, and there are tools that can be used to help with communication and sharing of information. Setting the stage for this kind of governance structure will help set expectations and help all stakeholders as they advance through the process. With these guardrails of governance in place, co-production of care can be very rewarding for all involved. Co-production of care for rare disease patients can also challenge perceived roles and the mindset of who the expert is. Historically we have taken a paternalistic approach to healthcare. However, as co-production of care is embraced, the patient or even the caregiver may be able to take on or share the role of expert as it relates to the needs and course of action for the patient. Although the basic concept of co-production is not new, applying its basic principles of creating opportunities for clinicians, patients, caregivers, and researchers to work together can result in redesigning healthcare in a way to improve care and outcomes in a truly patient-centered manner.



Jason Colquitt, is the founder and chief executive officer of Across Healthcare. He has worked for 22 years building innovative healthcare technologies and is also a rare disease patient who experienced a 32-year diagnostic journey. Through his leadership and vision, Across Healthcare has built a software platform called “Matrix” that supports many rare disease communities successfully using this concept of co-production of care.

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