Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons.

This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network--one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008-2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.

The introduction and evaluation of mobile devices to improve access to patient records: a catalyst for innovation and collaboration at BCCA.

Prompt and efficient access to patient records is vital in providing optimal patient care. The Cancer Agency Information System (CAIS) is the primary patient record repository for the British Columbia Cancer Agency (BCCA) but is only accessible on traditional computer workstations. The BCCA clinics have significant space limitations resulting in multiple health care professionals sharing each workstation. Furthermore, workstations are not available in examination rooms. A novel and cost efficient solution is necessary to improve clinician access to CAIS. This prompted the BCCA and IMITS to embark on an innovative provincial collaboration to introduce and evaluate the impact of a mobile device to improve access to CAIS. The project consisted of 2 phases with over 50 participants from multiple clinical disciplines across BCCA sites. Phase I evaluated the adoptability, effectiveness and costs associated with providing access to CAIS using a generic viewer (Citrix). Phase II incorporated the feedback and findings from Phase I to make available a customized mobile device-specific application. Phase II also addressed privacy and security requirements.

Telehealth--a change in a practice model in oncology.

BACKGROUND: A clinical study to examine the barriers to using telehealth for oncologic visits was performed by the British Columbia Cancer Agency's Vancouver Island Centre (BCCAVIC) and the Vancouver Island Health Authority in 2006-2007. One of the major barriers encountered was physician engagement. The current observational study was to determine whether patients' enthusiasm and the introduction of telehealth in a study resulted in telehealth becoming integrated within BCCAVIC. METHODS: Telehealth appointment statistics continued to be kept after the original study was completed. Data were kept on the number of visits, the type of visit (follow-up or new patient), the oncologist seeing the patient, the location of the patient, and the type of cancer. RESULTS: During the study, 106 patients were seen via telehealth. In the years following the trial, the number of telehealth follow-up patients seen markedly increased, so that in 2010-2011, close to 1,200 patients were seen. Medical oncology saw 91.4% of these. CONCLUSIONS: The introduction of oncology telehealth in BCCSVIC/Vancouver Island Health Authority was in an ethics-approved study. Following the completion of the trial, there was a 10-fold increase in follow-up patients seen using this modality. Reluctance to see new patients through telehealth probably relates to the necessity to change the patient encounter paradigm. There is a need to develop a model where patients who are a distance from specialists concentrated in larger centers have reasonable access to the same standard of care, without incurring the time and financial burdens. Telehealth would be a part of that model.

Assessing the feasibility of data mining techniques for early liver cancer detection.

The objective of this study is to assess the feasibility of a data mining association analysis technique, the FP Growth algorithm, for the detection of associations of liver cancer, geographic location and demographic of patients. For the research, we are planning to use data extracted from electronic health record systems of three healthcare organizations in different geographic locations (Canada, Taiwan and Mongolia). The data are arranged into 'transactions' which contain a set of data items focused around cancer diseases, geographic locations and patient demographics. This analysis produces association rules that indicate what combinations of demographics, geographic locations and patient characteristics lead to liver cancer.

Characteristics of patients at risk for adverse drug events: designing for patient safety and decision support.

Adverse drug events are a significant global health issue. In this paper we describe our research work to date in identifying the characteristics of patients who are at risk for adverse drug events. We conducted a focus group study with health professionals to identify those characteristics of patients that health professionals attend to if they believe a patient is at risk for an adverse drug event. This work is being undertaken in order to develop an electronic decision support system that will alert health professionals to the presence of such patient characteristics in order to support their clinical decision making.

Teleoncology uptake in British Columbia.

Telehealth enables the delivery of specialized health care to patients living in isolated and remote regions. The purpose of this analysis is to determine the current uptake of teleoncology in mainland British Columbia. Patient appointment data was extracted from the Cancer Agency Information System (CAIS) for the 2009 calendar year. Three types of practitioners used teleoncology in 2009: Medical Oncologists, Genetic Counsellors and Medical Geneticists. In total, 712 telehealth encounters were conducted; Medical Oncologists conducted 595 encounters (83.6%), Genetic Counsellors conducted 112 encounters (15.7%) and Medical Geneticists conducted 5 encounters (0.7%). The most common oncology appointments were Gastro-Intestinal (11.4%) and Lymphoma (11.0%) follow-up appointments with a Medical Oncologist. Telehealth encounters were conducted by 46 individual health care providers however, a single Medical Oncologist conducted 418 encounters and this accounts for more than half (58.7%) of all telehealth appointments in 2009. Radiation Oncologists on the mainland up to this point are not using the technology. The Local Health Areas with the highest number of oncology telehealth appointments were: Kamloops: 203 encounters (34.1%), Penticton: 84 encounters (14.1%), Cranbrook: 58 encounters (9.7%) and the Southern Okanagan: 33 encounter (5.5%). Use of telehealth in rural and remote areas of BC is limited and there is significant room for growth. Further research will be required to identify barriers and restrictions to the use of telehealth in order to increase teleoncology adoption in British Columbia.

Sociotechnical evaluation of a clinical transformation project in a specialized cancer care centre.

The radiation therapy (RT) department at the British Columbia Cancer Agency - Vancouver Island Centre (VIC) is responsible for delivering radiation treatments to cancer patients from Vancouver Island, which has a population base of approximately 750,000. The purpose of this analysis is to examine a process transformation project undertaken by a VIC clinical champion using a sociotechnical approach and identify factors that influenced the project outcome. Beginning in January 2009, a radiation oncologist at VIC initiated a project to transform the clinical process of generating prescriptions for radiation therapy. The project objective was to replace the paper-based process for radiation therapy (RT) prescriptions with an electronic process to achieve benefits such as increased legibility, accuracy, and accessibility of prescriptions. The electronic prescription (e-Rx) process was designed and developed by health informatics students from the University of Victoria, and the new process was trialed and implemented for approximately half of the new patients seen by the VIC RT department. This pilot implementation was brought to a halt two weeks later, due to concerns raised by the RT department. Using a sociotechnical approach, the authors identify several factors that negatively impacted the project's successful implementation: lack of leadership endorsement and organizational strategy, insufficient formal and informal organizational power of the clinical champion, underestimation of complexity, and inadequate management of the implementation process. Although these factors have been well documented in the literature for large-scale system implementation projects, understanding the way by which they influence smaller-scale process transformation projects in highly specialized clinical settings may help future project managers and coordinators to set such projects up for success.

Use of combined androgen blockade for advanced prostate cancer in British Columbia.

OBJECTIVES: Initial androgen deprivation therapy (ADT) for metastatic prostate cancer with combined androgen blockade (luteinizing-hormone releasing hormone agonist [LHRH agonist] plus antiandrogen) is not recommended in British Columbia (BC). However, this is difficult to monitor since ADT includes concurrent antiandrogen for the first month of LHRH agonist to prevent disease flare. We describe the prevalence of CAB use in BC and its financial impact. METHODS: This was a population-based, retrospective analysis. Patients started on LHRH agonist in January 2005 to December 2006 were identified from the BC Cancer Agency database. CAB was defined as greater than 1 month of antiandrogen concurrently with LHRH agonist. Incremental cost of CAB was based on an average 18 months of therapy from the pivotal CAB study. Incremental cost-effectiveness ratio (ICER) was based on life-year gained (LYG) from the Prostate Cancer Trialists' Collaborative Group meta-analysis. Estimated financial impact for 2007-2008 was based on an annual increase by 5.5% in prevalence of prostate cancer in BC. RESULTS: A total of 2751 patients were identified. CAB was used in 607 patients (22%), associated with an incremental cost of CDN$1768 and ICER of CDN$11,220/LYG per patient. Total incremental cost was CDN$1,073,176 and estimated to be CDN$1,398,644 for January 2007 to December 2008. CONCLUSION: Nearly one-quarter of patients were treated with CAB for metastatic prostate cancer even though it was not recommended in BC. Additional cost of CAB use was considerable, at CDN$1768 per patient. With increased prevalence of prostate cancer, this has important budget implication for funding agencies which do to recommend CAB.

The Medium Is the Message: How Do Canadian University Students Want Digital Medication Information?

(1) Background: To facilitate optimal prescription medication benefits and safety, it is important that people are informed about their prescription medications. As we shift towards using the digital medium to communicate medication information, it is important to address the needs and preferences of different user groups so that they are more likely to read and use this information. In this study, we examined what digital medication information (DMI) format Canadian University students want and why. (2) Methods: This study was a qualitative investigation of young (aged 18-35) Canadian University students' (N = 36) preferences and rationale supporting these preferences with respect to three potential formats for providing DMI: email, a mobile application (app), and online. Reported advantages and disadvantages of each of the three DMI formats were identified and categorized into unique themes. (3) Results: Findings from this study suggest that Canadian University Students most want to receive DMI by email, followed by a mobile app, and finally they were least receptive to online DMI. Participants provided diverse themes of reasons supporting their preferences. (4) Conclusions: Different user groups may have different needs with respect to receiving DMI. The themes from this study suggest that using a formative evaluation framework for assessing different DMI formats may be useful in future research. Email may be the best way to share DMI with younger, generally healthy, Canadian University students who are on few medications. Further research is required to explore whether other mediums for DMI are more appropriate for users with other characteristics (e.g., older and less educated) and contexts (e.g., polypharmacy and complex conditions). Given the flexibility of digital information, DMI could plausibly be provided in multiple formats and could allow users to choose the option they like best and would be most likely to use.

Pharmacy information systems in Canada.

The goal of Canada Health Infoway is to provide at least 50% of all Canadians with an electronic health record (EHR) by 2010. The goal of the Infoway Drug Information Systems Program is to develop an interoperable drug information system that will keep each patient's medication history: prescribed and dispensed drugs, allergies, ongoing drug treatment, etc. Drug and drug-interaction checks will be performed automatically and added to the patients' drug profiles. Physicians and pharmacists will be supplied with data to support appropriate and accurate prescribing and dispensing, thereby avoiding adverse drug interactions and drug-related deaths [1]. This paper describes Canadian developments in pharmacy eHealth. It presents the results of the Pharmacy Informatics Pharmacy Special Networks (PSN) survey about computer systems used in hospital pharmacies across Canada including information concerning Computerized Provider Order Entry (CPOE) systems deployed; which may reduce the number of errors in orders.

Adopting and introducing new technology to improve patient care: a wedding of clinicians and informatics specialists.

The BC Cancer Agency sees 128,172 patients per year, of which 2,186 are referred to the Patient Symptom Management/Palliative Care (PSMPC) clinics for tertiary symptom management. Other than at the PSMPC clinics, screening for symptom distress is extremely variable because there is no systematic assessment protocol. In a recent audit of patients coming to the Cancer Agency, approximately 64% of patients reported experiencing a moderate to severe level of symptom distress. Of the total patients in the audit (n = 1,147), only 18 were seen by the PSMPC teams and it is unclear whether or not the remaining patients had their symptoms attended to by a health professional at the BCCA.The tool which the BCCA has chosen for screening and assessment is the Edmonton Symptom Assessment System (ESAS), which was developed by Dr. Eduardo Bruera. ESAS is a nine-item, self-reporting, visual analogue instrument used to measure pain and other symptoms using numeric ratings. Cancer Care Ontario (CCO) has developed an electronic means whereby patients' ESAS scores are entered and housed in an electronic health record and then used for triage. BCCA is in partnership with CCO to adapt this system for use in BC.

We Built It, But They Are Not Coming: Exploring Deterrents to Consumer Medication Information Use.

Given the prevalence of prescription medication use, it is important that consumers are aware of the benefits and risks of taking their prescribed medications. One approach to informing consumers in North America is to provide them with Consumer Medication Information (CMI), the paper leaflets given to consumers when they fill a prescription for the first time. Unfortunately, reported use rates of written medication information are quite low. As part of a broader study investigating memory, perceptions, preferences and information needs around CMI, this study specifically examined reported deterrents to CMI use. Findings from this study revealed three areas that appear to influence CMI use: 1) Documentation, how CMI is designed and what it contains; 2) Provision, how and when CMI is given to consumers; and 3) Context, what the individual's characteristics and experiences are. These three factors warrant further investigation to reveal more of their unique facets and their relative influences on CMI use. That is, some aspects may be more influential than others.

Adjuvant therapy with raltitrexed in patients with colorectal cancer intolerant of 5-fluorouracil: British Columbia Cancer Agency experience.

BACKGROUND: Severe 5-FU toxicity in adjuvant therapy of colorectal cancer may require change of therapy. We retrospectively explored the safety and efficacy of adjuvant raltitrexed in patients intolerant of 5-FU. METHODS: Over a 5 year period, patients who received 5-FU and subsequent raltitrexed therapy were identified. RESULTS: There were 44 patients, (39 stage III). Median number of prior 5-FU cycles was 2. Three year relapse free and overall survival proportions for stage III patients were 70.8% and 83.6%, respectively. CONCLUSIONS: Raltitrexed adjuvant therapy can be given safely and effectively in patients where further 5-FU is contraindicated.

Deriving a Set of Privacy Specific Heuristics for the Assessment of PHRs (Personal Health Records).

With the emergence of personal health record (PHR) platforms becoming more widely available, this research focused on the development of privacy heuristics to assess PHRs regarding privacy. Existing sets of heuristics are typically not application specific and do not address patient-centric privacy as a main concern prior to undergoing PHR procurement. A set of privacy specific heuristics were developed based on a scoping review of the literature. An internet-based commercially available, vendor specific PHR application was evaluated using the derived set of privacy specific heuristics. The proposed set of privacy specific derived heuristics is explored in detail in relation to ISO 29100. The assessment of the internet-based commercially available, vendor specific PHR application indicated numerous violations. These violations were noted within the study. It is argued that the new derived privacy heuristics should be used in addition to Nielsen's well-established set of heuristics. Privacy specific heuristics could be used to assess PHR portal system-level privacy mechanisms in the procurement process of a PHR application and may prove to be a beneficial form of assessment to prevent the selection of a PHR platform with a poor privacy specific interface design.

Are Health Literacy and eHealth Literacy the Same or Different?

Many researchers assume that there is a relationship between health literacy and eHealth literacy, yet it is not clear whether the literature supports this assumption. The purpose of this study was to determine if there was a relationship between health and eHealth literacy. To this end, participants' (n = 36) scores on the Newest Vital Sign (NVS, a health literacy measure) were correlated with the eHealth Literacy Scale (eHEALS, an eHealth literacy measure). This analysis revealed no relationship (r = -.041, p = .81) between the two variables. This finding suggests that eHealth Literacy and health literacy are dissimilar. Several possible explanations of the pattern of results are proposed. Currently, it does not seem prudent to use the eHEALS as the sole measure of eHealth literacy, but rather researchers should continue to complement it with a validated health literacy screening tool.

Mining Association Rules in the BCCA Liver Cancer Data Set.

The objective of this study is to apply data mining techniques to determine factors that are commonly associated with liver cancer incidence, using an anonymized data set of 6064 patients from the British Columbia Cancer Agency (BCCA). The association rules indicate that in BC the patient demographic factors associated with increased liver cancer include: age ranges 60-69, male gender, and geographic location in the Greater Vancouver area. The main factors associated with decreased survivability in BC were being male and in the age range 70-79. In the Yukon, being male and in the age range 60-69 was the main factor associated with both increased incidence of liver cancer and decreased survivability.

Impact of irinotecan and oxaliplatin on overall survival in patients with metastatic colorectal cancer: a population-based study.

A look at the temporal impact of advancements in therapeutic options in the last 10 years-from fluorouracil to irinotecan and oxaliplatin-on overall survival in a population-based cohort.

Risk of early recurrence among postmenopausal women with estrogen receptor-positive early breast cancer treated with adjuvant tamoxifen.

BACKGROUND: Adjuvant aromatase inhibitors (AIs), instead of or after tamoxifen, are effective in decreasing recurrence in postmenopausal women with estrogen receptor (ER)-positive breast cancer. An understanding of which patients are at risk of early recurrence while they are receiving tamoxifen may improve clinical decision making. METHODS: The patients who were included in this study were women aged >or= 50 years with early-stage, ER-positive breast cancer diagnosed between 1986 and 1999 and had been treated with tamoxifen. Characteristics of the patients with early recurrences (within 2.5 years of diagnosis), late recurrences (between 2.5 years and 5 years) and no recurrence within 5 years were compared. Logistic regression analyses were conducted to identify which groups were at risk of early recurrence. RESULTS: Among 3844 women, 304 women (7.9%) developed disease recurrence within 2.5 years. Higher than average rates of recurrence within 2.5 years were observed in cohorts with lymph node (N)-positive tumors (11.5%), grade 3 histology (14.3%), or low-positive ER levels, ie, 10-49 fmol/mg or 10%-20% staining (14.9%). In multivariate analyses, only pathologically N-positive tumors (1-3 vs 0 positive lymph nodes: odds ratio [OR], 1.6; 4-9 vs 0 positive lymph nodes: OR, 2.23 [P= .03]) and low-positive ER status (OR, 2.04; P= .01) were associated with recurrence within 2.5 years compared with recurrence between 2.5 years and 5 years. Other clinical and pathologic variables were not predictive of early recurrence. CONCLUSIONS: Subgroups of women with early ER-positive breast cancer may be identified who are at increased risk of recurrence within 2.5 years of diagnosis despite tamoxifen. It remains to be proven whether upfront AI therapy results in an advantage to these women.

The impact of new chemotherapeutic and hormone agents on survival in a population-based cohort of women with metastatic breast cancer.

BACKGROUND: Over the past decade, a number of new therapeutic agents have become available in the treatment of metastatic breast cancer (MBC). This study characterized the use and assessed the impact on survival of population-based access to new agents for the treatment of MBC. METHODS: The dates of release in British Columbia of 7 new systemic agents for MBC during the 1990s were used to construct 4 time cohorts. All patients with a first diagnosis of distant metastases in each of the time cohorts were identified and characterized, and their survival was compared. Cox proportional regression modeling was used to assess for predictors of survival. RESULTS: In total, 2150 patients with a first distant metastases diagnosed during 1 of the 4 cohort intervals were identified. Baseline characteristics between cohorts were similar, except a greater proportion of the later cohorts received adjuvant chemotherapy (P < .001), had positive estrogen receptor status (P = .01), and had a longer median time from initial diagnosis to MBC (P < .001). Survival in Cohort 1 (1991-1992) and Cohort 2 (1994-1995; median, 438 days and 450 days, respectively) was similar. Survival was longer in Cohort 3 (1997-1998; median, 564 days; P = .002) and improved further in Cohort 4 (1999-2001; median, 667 days; P = .05). In multivariate analysis, the later cohorts were associated independently with improved survival (P = .01 and P < .001, respectively). CONCLUSIONS: Population-based access to new therapeutic agents for MBC appeared to be associated with improved survival. To the authors' knowledge, this is the first study to date that demonstrates, from a population-based perspective, improving survival over the past decade for women with MBC.