Mapping the journey of cancer patients through the health care system. Part 2: Methodological approaches and basic findings

Abstract

This is the second in a series of articles from a line of research whose intent was to construct a complete history of interactions with the health care system. This paper provides details of the methods developed to collect and collate the scattered information regarding the event history (trajectory) that a cancer patient experiences in traveling through the Manitoba health care system from one year prior to diagnosis through to two years post-diagnosis. Survival data were obtained through 1994. Basic population data obtained from this work are also presented, including survival information through to four years post-diagnosis. Issues regarding standardized data recording and detail level of clinical events in the chart record are discussed. This part of the research demonstrates that diverse data sources in the health care system can be linked with a high degree of accuracy and completeness of data.

Lessons Learned From a Survey of the Diagnosis and Treatment Journeys of Postmenopausal Women With Hypertension

“…37 Studies published to date on patient journeys have been limited, providing data from small numbers of research interviews or focus groups. [21][22][23][24]38 The current study, while limited to 300 respondents, represents the largest published examination of women's journeys with hypertension. Results of the current study reinforce themes observed in other studies of patient journeys with cardiovascular disease, including the need for patientcentric communication 24 and the need for health care providers to understand the social constructs that are unique to women's experiences with cardiac disease.…”

“…Studies published to date on patient journeys have been limited, providing data from small numbers of research interviews or focus groups . The current study, while limited to 300 respondents, represents the largest published examination of women's journeys with hypertension.…”

“…Published studies mapping other medical journeys (eg, cancer, rheumatoid arthritis, and hearing loss) have provided valuable insight into patient perspectives and key areas for improving clinical management strategies. [20][21][22][23] Data on such journeys through hypertension are limited 24 and this is the first study to explore the processes of the US health care system, specifically examining the experience of highrisk postmenopausal women. Participants were members of the database of WomenHeart: The National Coalition for Women With Heart Disease, which is the only national organization supporting women living with or at risk for cardiovascular disease through advocacy, education, and patient support.…”

“…By mapping this journey, it may be possible to better understand patient needs and identify areas where improvements in care can result in faster diagnosis or better disease management. Published studies mapping other medical journeys (eg, cancer, rheumatoid arthritis, and hearing loss) have provided valuable insight into patient perspectives and key areas for improving clinical management strategies . Data on such journeys through hypertension are limited and this is the first study to explore the processes of the US health care system, specifically examining the experience of high‐risk postmenopausal women.…”

The trajectory of lung cancer patients in Western Australia—A data linkage study: Still a grim tale

“…Therefore data linkage methods offer the prospect of tracking patients as their care is delivered through a plethora of administrative and clinical centres each with their own records. Researchers in Canada and Western Australia have notably linked data from multiple sources to address questions such as patterns of use of health services by the older populations [4], the quality of surgical care [5], factors affecting hospital use [6,7], and mapping the journey of cancer patients through the health care system [8]. Data linkage affords critical comparisons across geographical regions, demographic characteristics, and use of hospitals and treatment modalities.…”