(41) Advancing Patient-Centered Research and Care Through Journey Mapping: EMPOWER Project

Background: Pregnant and postpartum (perinatal) people with substance use disorders (SUD) are at increased risk of morbidity and mortality, thus access to perinatal care and substance use treatment is particularly important. Prior research has demonstrated this population is 40-60% less likely than their peers to receive recommended perinatal care and among patients who receive medication for opioid use disorder during pregnancy, more than half (56%) discontinue medication within six months after delivery. To-date research and interventions focused on perinatal people with SUD generally are not informed by people with lived experience. Research initiatives and interventions for this at-risk population need to be co-created with patient stakeholders to improve access and utilization of healthcare. Patient journey mapping is a strategic method used to identify experiences of individuals or groups when interacting with healthcare and other complex systems. Therefore, the EMPOWER project, a multistakeholder group including patients with lived experience of SUD during the perinatal period, clinicians, community partners, and researchers utilized journey mapping to provide an in-depth understanding of the experiences of this population to inform future research studies, interventions, and clinical care.

Methods: Six patient stakeholders, defined as people with lived experience of SUD during the perinatal time period, participated in an individual journey mapping session hosted through a virtual video platform. Each session was attended by a visual artist, group facilitator, psychologist, and researcher. Patient stakeholders shared their experiences during pregnancy and postpartum related to seeking treatment from healthcare systems. In real-time, their experiences were illustrated by the artist. The six individual journey maps were then summarized by stakeholders to create a Collective Journey Map during additional group sessions.

Results: Through the use of journey mapping methods, the EMPOWER project uncovered complex, persistent, and multi-system level barriers to healthcare during the perinatal time period. Patient stakeholders reported entering the healthcare system through primary care or the emergency room where providers with specific expertise in addiction were unavailable. This led to receiving inaccurate information, mistrust, and SUD treatment delays. Contradictory information from doctors, nurses, and child protective services exacerbated stress and created anxiety in seeking healthcare. Providers with training in addiction medicine/psychiatry were recognized as patient champions, and eventual access to these providers resulted inappropriate, albeit delayed, receipt of perinatal care and SUD treatment. Experiences of stigma within the patients’ community and healthcare systems negatively impacted their healthcare journeys. Commonly identified barriers to care experienced by stakeholders included current and historical trauma, inadequate public transportation, lack of stable housing, food insecurity, and long wait times to access treatment services for perinatal people with SUD. During mapping sessions, patient stakeholders identified solutions, interventions, and changes the healthcare system could adopt to improve access and utilization of care during the perinatal time period.

Conclusion: Journey mapping methods are a powerful tool in uncovering the stories and experiences of people with SUD. The Collective Journey Map led to a deeper understanding of individual, healthcare system, and community level barriers to care. The Collective Journey Map has improved understanding of patient experiences, identified new research questions, and positioned patient stakeholders as experts in initiatives aimed at improving outcomes for people with SUD.

References: 1. Nidey N, Kair LR, Wilder C, Froehlich TE, Weber S, Folger A, Marcotte M, Tabb K, Bowers K. Substance Use and Utilization of Prenatal and Postpartum Care. J Addict Med. 2021 Mar 19:10.1097/ADM.0000000000000843. doi: 10.1097/ADM.0000000000000843. Epub ahead of print. PMID: 33758116; PMCID: PMC8449796.

2. Wilder C, Lewis D, Winhusen T. Medication assisted treatment discontinuation in pregnant and postpartum women with opioid use disorder. Drug Alcohol Depend. 2015 Apr 1;149:225-31. doi: 10.1016/j.drugalcdep.2015.02.012. Epub 2015 Feb 19. PMID: 25735465.

3. Trebble TM, Hansi N, Hydes T, Smith MA, Baker M. Process mapping the patient journey: an introduction. BMJ. 2010 Aug 13;341:c4078. doi: 10.1136/bmj.c4078. PMID: 20709715.

Diversity, Equity, and Inclusion: The EMPOWER project is a collaborative of multidisciplinary stakeholders, including patients with lived experience of SUD, researchers, clinicians and community partners. Our long-term goal is to advance healthcare equity for pregnant and postpartum people with SUD. Through collaborating with patient stakeholders we have begun to uncover how healthcare system and community level factors drive unjust and unfair conditions leading to disparities in healthcare access. Journey mapping methods were leveraged to position patients as experts and build their capacity to co-develop and co-lead research initiatives and programs that will advance healthcare equity and eliminate disparities in care.