Informing health care system navigation through patients’ journey
Integration of health services has been touted as key to addressing many issues identified in the health care system. As we strive to improve integration, patient stories can inform improvement strategies. So, what is it that patients experience as they interact with the health care system?
We conducted a study that followed the journey of four older adults, three women and one man, diagnosed with chronic obstructive pulmonary disease for three months after they were discharged from hospital (Jackson et al., 2012; Alberta Health Services, 2008). The setting was Calgary, Alberta – a large city in western Canada. We asked participants to complete a diary tracking their contacts with the health care system. We also individually interviewed them monthly for three months about their experiences with the health care system.
What did we see?
In the three months following hospital discharge, our participants had many encounters with the health care system including visits to specialists, specialty clinics/services, primary care physicians or walk-in clinics, and others such as community pharmacies and lab or diagnostic imaging services. Some also had visits from home care.
What did we hear?
One of our main findings was about navigating the health care system. Our participants described navigation as complex and, at times, frustrating. There were three key sub-themes related to navigation: previous experience with the health care system and social support, patient-provider communication, and communication among providers.
Previous experience with the health care system facilitated patients’ understanding and expectations of the health care system resulting in an easier journey. For one participant, previous experience gave them more trust in a specific health care provider. Social support from family, friends, and health care providers enhanced the quality of the interactions with the health care system. Participants with a high degree of social support often had a key person or personal advocate who assisted with scheduling appointments, understanding and remembering care instructions, and navigating the system.
Poor communication between patients and providers hindered navigation. In many instances, our participants did not know if they had received all the information they needed and there were times when their needs were not met due to a lack of information exchange between them and their providers. None of the participants knew what to ask their health care providers, and preparation for an anticipated development or potential crisis (anticipatory guidance) by providers was lacking. As well, participants noted they often did not have opportunities to ask questions.
Also contributing to the confusion of navigating the system was the perception that communication between providers was lacking. Our participants stated that they often had to assume responsibility for updating providers and reminding providers to send reports to each other. In another study we are currently completing (Alberta Health Services, 2013), both patients and providers reported a lack of information sharing among health providers which often resulted in patients conveying their own health information to many providers. In this same study, patients perceived a disconnect between physicians, hospitals, and community services, and felt that they would be better serviced if providers were more aware of other resources.
What does this mean?
Implications for improving access, coordination of care, and continuity of care include:
Assessment of social support for patients is required. Social support is extremely valuable for older patients with multiple chronic conditions and assists in navigating the health care system. Families, significant others, and friends need to be incorporated as key members of the health care team.
Improved patient-provider communication contributes to more patient self-care capacity and less patient anxiety. By conducting a comprehensive patient assessment, providers can better address patient needs and concerns. As well, providers need to offer patients anticipatory guidance, teaching aimed at self-care, and information about other resources and services. Most importantly, providers need to include patients and their family in planning and evaluating their care.
Innovative technology can support patient-provider communication. Easy access to information, teaching protocols, and care guidelines can help providers better meet the information and teaching needs of their patients. Patient access to a personal health portal can empower patients to better manage their health and wellness.
Improved communication among all health care providers (for example, among acute care, primary care, home-care, community pharmacists) minimizes fragmented care and avoids repeated storytelling by the patient. Continued work on a shared electronic health record and an integrated plan of care is necessary.
If you would like further information on the work completed by Workforce Research and Evaluation, please visit Alberta Health Services.
|Authors :||Karen Jackson, RN, BScN, MEd
Senior Research and Evaluation Consultant
Alberta Health Services
Nelly D. Oelke, RN, BScN, MN, PhD
Assistant Professor, School of Nursing
Faculty of Health and Social Development
University of British Columbia,
Alberta Health Services. Report on the Patient Journey Study. (2008). Accessed June 10, 2013 from http://www.albertahealthservices.ca/Researchers/if-res-hswru-pt-journey-report-2008.pdf
Alberta Health Services. Root Cause Analysis of Barriers to Delivery of Integrated Care: Collaborative Workshop. (2013). Accessed June 10, 2013 from http://www.albertahealthservices.ca/Researchers/if-res-wre-root-cause-of-barriers-to-integrated-care-workshop-summary-2013.pdf
Jackson K., Oelke N.D., Besner J., & Harrison A. (2012). Patient Journey: Implications for Improving and Integrating Care for Older Adults with Chronic Obstructive Pulmonary Disease. Canadian Journal on Aging / La Revue canadienne du vieillissement, 31(2), pp 223-233 doi:10.1017/S0714980812000086.