With the Patient Pathway clearly defined, it is important toensure key aspects of delivering care along are monitoredand assessed.
Effective performance management will be achieved viathree main channels:
- Utilization of patient experience measuresto affect change
- Publication of KPI targets to monitorand regulate the performance againstpre-defined outcomes
- Full integration, development,and reporting of the Qatar National Cancer Registry
It is only through collecting, using and publishing data,that performance can be transparently measured.When the NCS was first launched, the majority of patient information in Qatar was paper based in files and manually accessed or edited. This posed problems across a widerange of areas, from patient experience, quality of care,to pharmacy management. HMC, PHCC and Sidra have now all gone live across their facilities with a common EMR system, which can now facilitate the comprehensive collection of data to support the performance management efforts.
Accordingly, this represents a tremendous opportunity to deliver improvements in patient experience in things that patients notice like scheduling and follow-up. More tools are now available to clinicians in Qatar for more complex areas that can directly affect the provision of care, accessto diagnostic or lab results, understanding of care plans for patients with co-morbidities, or access to genetic family records. Of course it is not only clinicians who can
make use of this data, most advanced health systems are empowering patients by providing them access to relevantdata and Qatar should explore the potential of a digital application in this area.
Performance management is further supported by the QNCR, combining information on both incidence and screening. Of course, having access to data is just the start,developing sophisticated analytics capabilities to turndata into knowledge, is a challenge most advanced healthsystems are still facing. The importance of transparency in reporting cannot be underestimated. All providers shouldbe encouraged to actively report on KPIs, which can be used positively to continue to support improvements in cancer care.
The size of Qatar and appetite to exploit this new field means that significant improvements should be delivered over the coming six years. Use of EMRs, supported by a connected e-Health system, the cancer registry and evolving collaborative networks represent a tremendous opportunity to deliver significant improvements in patientcare.Performance management is further supported by the QNCR, combining information on both incidence and
screening. Of course, having access to data is just the start,developing sophisticated analytics capabilities to turn data into knowledge, is a challenge most advanced health systems are still facing. The importance of transparency in reporting cannot be under estimated. All providers should be encouraged to actively report on KPIs, which can be used positively to continue to support improvements in cancer care.
Priorities
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Patient Experience and Patient Voice
Patient Experience and Engagement Channels
With the patient at the center of the cancer continuumof care, capturing patient experience is vital in delivering excellence. The best way to measure and continue to develop excellent patient-centered care is to ask the patient. There will be five main methods for gathering information on patient experience across the seven stages of the cancer care continuum:
- Cancer Awareness Measure tool
- Patient survey reporting
- Live reporting
- Retrospective feedback
- Patient engagement groups
Advanced health systems monitor outcome measures not solely based on registries and databases but reported by patients themselves. Patient reported outcome measures could be a powerful tool for improving services. The QNCR can also be used to capture the experience of patients who have travelled overseas. Patients should have easy and routine access to this information, as informed partners in developing cancer services.
Future development in technology and innovation will allow for increased information gathering methods and the resulting outcomes will be fedback into the performance management system to enhance patient care and experience. All major programs of work related to this strategy should include a patient representative within the project team who will play an active role in shaping the future of cancer services along the Patient Pathway. The voice of the patient who has experienced cancer care must be heard, understood and acted upon in the delivery of care.
To establish quality of services in Qatar, it will be necessary to robustly benchmark and monitor performance both internally and with international peers. A clinical forum for the development of KPIs associated with the Framework must be established in ensure that the processis underpinned by clinical expertise and background knowledge to cancer services provision in Qatar. This will require development of a comprehensive performance monitoring system covering a suite of indicators, including chemo therapy outcome data, sentinel events and near misses. Independent clinical audits should be routinely conducted, supported by international partners and NCAGs and a culture of transparency should be inculcatedin cancer services across Qatar.
Monitoring of cancer recurrence rates could be a valuable tool to assess the impact of follow-up and healthy life style education. The QNCR will enable monitoring of nation wide five-year survivability by 2018. This is a key measure. Used internationally, it takes into account not just the quality of hospital care, but longitudinal care across the whole pathway including regular follow-up of survivors.
Of course, not all determinants of five-year survival rateslie within the control of the cancer services or the broader health service within Qatar. It is therefore important to understand outcomes related to health seeking behaviors(i.e.: uptake of screening services, other societal and behavioral factors). To achieve significant impacts,the whole system must work together, not just within healthcare, but also with other Ministries to create an environment where all national policies consider their impact on health and how this could be improved.
Qatar has invested significantly in cancer services in the last five years. However, budgeting in the public sector
is not granular enough to capture all spending related to cancer services. Private sector spending is also not routinely made available to the MOPH. It is important to understand direct costs related to screening or treatmentat the NCCCR, and also indirect costs related to broader public health education and awareness messaging.
Granular budgeting, supported by high quality data, can help focus spending and avoid duplication of effort. The NHS proposed introduction of program-based budgets.Cancer is in an excellent position to implement this system and to capitalize from the rigor and transparency this could introduce. The PHS argues for an increase in the proportion of the total health budget allocated to awareness and prevention activities. Program based budgeting can over time accurately demonstrate the longterm value for money these inter ventions and others such as screening, represent to the overall health economy.
Similarly, more clarity on the true costs of cancer care can build investment cases for expanding provision of care in community and primary settings and ensure that those services are adequately resourced and funded.
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Making Improved Use Of Data
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Create a national cancer information governance and policy
Systematic secondary collection of cancer data should be justified and governed by rules protecting patient rights and clearly describe data and information governance. A Cancer Data Information Governance Committee should be established to oversee any secondary data collection in Qatar. This multidisciplinary committee will approve the following:
- Establishing a national cancer data policy, which will set policies for:
- Data protection, confidentiality and privacy
- Data collection, storage, use and sharing
- Data ownership
- Requests for establishing any systematic and longterm secondary data collection, excluding collecting data for research that has end points
With the increased demand of data driven plans and policies, the establishment of the national e-health strategy,and the need to create a cancer service environment based on data sharing and exchange, the creation of the Qatar Cancer Information Center (QCIC) will be one of the milestones of the Framework.
The QCIC will be the national data repository for cancer information. It will have a central database with external stakeholder integration links. These links will specifically connect to the Ministry of Interior for demographic data,the clinical information systems used at HMC and PHCC,and the QNCR for continuity of cancer information flow.Future registries can then be built based on the QCIC, such as the following which are planned for implementation inline with this Framework:
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Cancer Screening Registry
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National Stem Cell Donor Registry
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Cancer Genetics Registry
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Hereditary Cancers Registry
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Cancer Research Registry
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Clinical Trials Registry
- Disease Specific Registries
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Strengthening the Qatar National Cancer Registry QNCR
The QNCR is becoming the cancer data warehouse in Qatar and it is actually composed of three registries:
- Cancer Incidence Registry
- Cancer Screening Registry
- Cancer Waiting Time Registry
All three registries systematically collect data on national level. With the infrastructure now in place to capture all epidemiological data for cancer in Qatar, four key uses have been identified to assist in the delivery of comprehensive and informed care:
- QNCR for quality improvement: Utilize the QNCR data to inform KPI measurement, collect information about the burden of cancer, monitor the progress of
all cancer related plans and programs, in addition to
evaluating the clinical service provided to the public at national level
- Integration with the e-Health system: The QNCR can integrate within the national e-health system, through the linkage with other national databases, enabling both
improvements in the quality of care and the preparation of future personalized medicine
- Deliver comprehensive cancer care: Integrated comprehensive data from different sources will create a single dataset and improve information sharing for education, prevention, incidence review and research
- Supporting and guiding clinical research and academia: Using QNCR data in clinical research as a population identification tool and encouraging research on clinical outcomes collected through extended treatment data
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Developing a National Cancer Intelligence Network
In accordance to the eHealth system implementation, it isrecommended that the QNCR be linked to other existing national databases, to enhance data collection and support a connected health system.With the QNCR at the heart, a comprehensive cancer intelligence network will emerge that will benefit of all partners in the country. This platform will combine all data from partners to provide comprehensive information about cancer in Qatar. This network will also provide epidemiological and expert analysis on cancer in the country. The network should have three main components:
- Partners: all stakeholders involved in cancer screening, prevention, care and research
- Website: which fosters information sharing and transparency
- Cancer data and statistics: includes all cancer KPIs collected by the QNCR and other cancer site-specific data and information
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Supporting the cancer research agenda
It is suggested to expand data collection to include information about cancer patients included in clinical trials. Data collection regarding treatment, side effects and toxicity for specific cancer diseases can help build the infrastructure for national clinical outcome research.Furthermore, the linkage between the QNCR and Qatar Bio-bank database could represent a significant steptowards developing personalized medicine.
Program Activities:
Patient Experience
| Lead
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- Develop and report on the ongoing findings of the patient experience questionnaire and live reporting application across the Patient Pathway
| HMC
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- Develop Patient Reported Outcome Measures
| MOPH
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Reporting Measures
| Lead
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- Implement an ongoing program of internal clinical audit for cancer services
| HMC
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- Continue development of the Qatar National Cancer Registry to enable monitoring of cancer recurrence and 5-year survival rates
| MOPH
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- Develop program based budgeting for cancer services
| MOPH
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Data
| Lead
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- Develop a National Cancer Intelligence Network
| MOPH
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- Create the Qatar Cancer Information Center
| MOPH
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