Abstracts

Rationale: Patient-centered care (PCC) has emerged as a dominant healthcare philosophy, placing the patient and family at the center of all decisions. Shared decision-making incorporates patient preference into treatment choices and is an improvement towards PCC. However, a limitation is that providers may assume the outcome the patient wants to achieve and presents only treatment options for that outcome. For example, in epilepsy, many providers assume that seizure freedom is the most important outcome to all patients. In fact, a proportion of patients would prioritize having their highest quality of life above complete seizure control, if both were not possible. Incorporating patient perspective into outcome measure selection, both in trials and real-world evaluations of care, will better align with the philosophy of PCC¹. We have found that patient preferences/priorities are effectively integrated into epilepsy care delivery via Co-Production, where people with epilepsy and their family/care partners (PFPs), healthcare providers and community services work together in a system optimizing the outcomes most important to PFPs and recognizing the resources required. It means being involved in decision-making about which outcomes are to be improved, ensuring the patient has options presented that are most relevant from their perspective.

Methods: An example of meaningful Co-Production comes from our experience in designing a learning healthcare system (LHS) for people with the epilepsies. In 2019, the Epilepsy Foundation (EF) worked with multiple partners to launch the Epilepsy LHS (ELHS)² to improve outcomes for people of all ages diagnosed with epilepsy. Patients, PFPs & community advocacy organizations were invited to participate in ELHS. They participated in the creation of network aims and priorities via conference calls.

Results: 19 PFPs and 18 community service partners (incl. local EF and Rare Epilepsy Network organizations) have Co-Produced with 13 pediatric and adult clinical centers, yielding true impact in ELHS, as demonstrated in Figure 1.

Conclusions: ELHS outcome measures identified by PFPs via co-production ensures that those measures are appropriate for the populations to be assessed and becomes a truly patient-centered value assessment methodology. LHSs incorporating Co-Production ensure that clinical care, science, informatics and culture are aligned for continuous improvement, innovation and research³.

References
¹Tseng EK, Hicks LK. Value Based Care and Patient-Centered Care: Divergent or Complementary? Curr Hematol Malig Rep. 2016 Aug;11(4):303-10. doi:10.1007/s11899-016-0333-2.
²Donahue MA, Herman ST, Dass D, Farrell K, Kukla A, Abend NS, Moura LMVR, Buchhalter JR, Fureman BE. Establishing a learning healthcare system to improve health outcomes for people with epilepsy. Epilepsy Behav. 2021 Feb 12;117:107805. doi:10.1016/j.yebeh.2021.107805. Epub ahead of pring. PMID:33588319.
³Britto MT, Fuller SC, Kaplan HC, et al. Using a network organizational architecture to support the development of Learning Healthcare Systems. BMJ Quality & Safety 2018;27:937-946.

Funding: Please list any funding that was received in support of this abstract.: None.