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Table 3 Profiles of the cancer centers against a selection of indicators. For each domain a selection of indicators and their outcomes is presented

From: Development of a benchmark tool for cancer centers; results from a pilot exercise

Topic Center
  A B C D E F G H
Type of center Comprehensive CC Comprehensive CC Clinical CC Comprehensive CC x Comprehensive CC Comprehensive CC Comprehensive CC
Effective
 Survival/mortality registration Gross mortality ratios (2.08%)per tumor type and -stage are published on the website. Gross mortality ratio per number of discharges is registered (9,5%) and Risk-Adjusted Mortality (e.g.age, sex, tumor etc.) (0,8836) Gross mortality rate is registered Gross inpatients mortality ratio (2.0%) is registered. Gross mortality ratio is registered Mortality ratios are collected only for patients who had surgery Mortality ratios are registered by the National Cancer Registry, published on the website. Not recorded at institutional level
 Colo-rectal surgery mortality (within 30 days) 0 Not registered Not registered 0 Unknown Unknown Not registered Unknown
 Innovative technology and therapies Budgets are not keeping up with the developments in technology’s and therapies and the increase in costs that comes with this Targeted biological treatments are not covered. New therapies will lead to a negative balance. This will cause a big challenge in the future. It is hard to introduce the latest technologies because they are not reimbursed. It might take 2–3 years to arrange reimbursement. - New treatments are very expensive, not always paid for by insurance
- Healthcare services are not able to provide state of the art treatment to all patients
Not foreseen as a major challenge. Biosimilar, and generics are a challenge. Several expensive drugs come to the market. Need for biomarkers All drugs are reimbursed, but there is a 6 month wait before the reimbursement comes. The national system is slower. ESMO guidelines are followed. Unknown
Safe
 Risk management - Quality, Occupational health and environment service
- Prospective risk assessments by MDT
- Staff training
- Dedicated emergency managers, available at the institute 24/7.
- Occupational health and Overall Risk Management Service
- Risk management system: general risk management and clinical risk management
- Annual risk factors analysis and prevention action plan.
- Evaluation of implementation end each year.
- Several protocols for risk management
- New employees undergo a thorough medical examination to decide if they are fit for employment.
- Emergency Assessments
- External Risk Assessments
-Department for prevention and control of nosocomial infections.
- Staff involved is formally trained and informed about the regulations
- Health and Safety function deals with prevention and management of staff safety
- The medical physics unit manages the prevention and control of radioactive risks for patients and staff.
- Strategy and program measurements are part of the institute and available on the website - Risk management plan overseeing clinical management and risk
-Medical Directorate coordinates all activities of preventive medicine and environmental health
- Protection and Prevention Service.
 Adverse events - Safe incident reporting system
- Every employee of the institute has access to this system and can report incidents
- Incidents are analyzed by relevant departments and feedback is given to the detector and an advice for improvement measures to the manager
- Patient safety committee monitors hospital-wide
- Everybody is allowed to make a notification of an adverse event
- Form allows notifier to make recommendations to prevent this situation
- All adverse events are collected by the CG service
- Quarterly reports on website
- Every staff member can inform the head of clinical department about potential threats.
- Medical staff fill a Report of discrepancies or adverse event and inform Head department
- Risk and prevention factors evaluation group prepare annual Risk factors and prevention actions plan for the Institute
- Adverse events and near misses reported on departmental level and institutional level
- Radiotherapy department has an IT system for reporting irregularities and adverse events
- Analysis of irregularities is reported on the shared drive and as well as patient complaints analysis
- Patient incidents are reported to the complaints registry thereafter addressed to the Management, and after evaluation addressed to the Ethics Council.
- Every incident is electronically recorded and sent to the public health authorities quarterly.
- In every department there is a local registry for incidents, reporting on paper.
- Medical errors: if nurse is involved she reports it to the doctor, if the doctor finds it serious, sends it to the medical committee. Nurses cannot report an incident directly.
- Institutional Incident Reporting program. The events are reported on a voluntary and not-anonymous base;
- Summary report is annually shared with the strategic directorate.
- Reporting usually on paper, but some departments have it electronically
- Patients can report incidents as well
System that registers and generates reports for patient satisfaction, patient safety, patient complaints. - The “incident reporting module” is available for staff in the institutional intranet and a counseling service is available.
- Sheets are anonymous.
- In practice only the actual events are reported.
Patient centered
 Case manager Case managers for head and neck cancer, breast cancer and melanoma
- Case manager usually nurse specialist or physician assistant
- Contact person for questions about their treatment etc.
- Case managers redirects patients to supportive services
- All patient receive leaflet with all information on how to reach their case manager.
The patient can contact:
The physician at an appointment;
- A member from the nursing staff that follows the patient;
- The social worker and/ or the psychologist that follows the patient
- An administrative office that is called “Patient Support Office”
- Patients are informed by treating physicians
- Nurses are also indicated as contact persons
- Contact person for each patient, by law, is their responsible specialized MD
- a designated Case Manager exists at the Same Day Surgery Unit
- Tasks of the Case Manager:
- Schedule procedure and inform patient in writing
- Collect the necessary paperwork and provide them to the anesthesiologist
- Provide patients with discharge records
The contact person for each patient is the physician (medical oncologist, surgeon etc.). The discharge letter contains all the information the patient needs, including a telephone number for the doctor in charge of the case, and in some cases, the number of the nurse of the day hospital clinic. There is a contact person/team – usually nurses - for each person. A contact number and all the needed pieces of information are given to the patient before discharge.
In the breast unit there is one case manager to act as a contact person.
- “personal support nurse” there in practice, not officially
- when needed there is option contact physician in charge
Basically there is a physician as contact person for patients but a specific case manager is not appointed for each patient. In clinical trials a case manager, often a research nurse, is appointed to coordinate appointments (exams, visits, follow-up) as primary contact for patients.
 Patient involve-ment (care) - Patient portal: access to their full medical file
- Patients can choose their own doctor
- Patient participation in decision-making regarding treatment depends on type of health insurance. Not all treatments covered by all types of health insurance
- Patients participate in the multidisciplinary appointments
- Physician discusses alternative treatments with the patient
- Patients can choose their own doctor
- Patients receive information about their diagnostic and treatment processes and must sign Statement of Faith.
- Information to patients and other entities is provided according to procedure
- Patients can choose their own doctor
- Patients can choose their own doctor
- Patients have the right to a Patient Representative
- Patients have the right to review their patient documentation and pose any questions
- Patients are explained the purpose of every diagnostic or therapeutic procedure and alternatives where available. The patient signs informed consent forms at every major step of the care pathway.
- Patients have the right to review their patient documentation and pose any questions
- Patients can choose their own doctor
- Oncologist and/or the multidisciplinary team propose the diagnostic and treatment processes. If the patient decides to accept the proposal, he/she has to sign the informed consent.
-Patients have the right to review their patient documentation and pose any questions
- MDT makes a recommendation, and physician decides with the patient. Patient receives most of the patient documentation automatically (and largely in e-format).
- All patients (citizens) have access to their own patient records
- Patients are involved in the discussion of their diagnostic and treatment plan during visits performed by physicians. Signature of the informed consent is intended as the acceptance of the patient to the proposed treatment.
 Patient involvement (strategy) - Patients are represented by the Patient Advisory Board (PAB).
- PAB promotes the common interests of patients and gives solicited and unsolicited advice to the Board of Directors
- Patient Support Office to establish connection between users and Board and streamline communication of the patient and the professionals - Patient representatives are not involved that much due to the lack of legislation and to the fact that representatives are not very active. - The Patient Representative participates in the Board of Directors’ meeting each week and communicates directly with the Board. - Patients can participate in the institute through offering suggestions or filing complaints/suggestions during their care in the institute. - Patients’ representatives are part of the Patient Education working group and proactively propose improvements to services - For some brochures patients are asked for opinion on design.
- Patient Advisory Board, heavily involved in developing services and care.
- There is a good relationship with the national Cancer Society.
- Collaboration with external patient organizations that address patients’ priorities and needs.
 Survivors - The institute offers multidisciplinary rehabilitation
- General rehabilitation and special rehabilitation program for patients with head and neck cancer.
- % Annual budget for survivorship programmes: 0.6%
- Website under development: “I Have Cancer”
-Groups related with the institute that give support to patients.
- % Annual budget for survivorship programmes: 0
-Rehabilitation treatment
-Cancer Information Center
-Patient’s school
-Social services and other rehabilitation services.
- % Annual budget for survivorship programmes: 0
- The survivorship programs are organized in collaboration with the League Against Cancer.
- % Annual budget for survivorship programmes: 0
- Psychological support is available in the Institute for patients and their families.
- Follow up program for survivors
- % Annual budget for survivorship programmes: 0
- The institute has a specific clinic for long term cancer survivors and cancer-free patients and a dedicated patient organization.
- % Annual budget for survivorship programmes: 0
- Support unit.
- Physiotherapy, Psychosocial support, Nutrition, Peer support, Sexuality, social support, support for families with children
- % Annual budget for survivorship programmes: 0.4%
- Chaplain and/or social workers and/or psychologists
-Multidisciplinary collaborations to support cancer patients and survivors
- % Annual budget for survivorship programmes: 0
Timely
 Waiting and throughput registration - Access and throughput standards (maximum times) set by government
- Dashboard quality and safety reports quarterly on waiting times
- Waiting times published on website
- Pass standards entry level requirement for negotiations with insurance companies
- Maximum set by government.
- Reported in annual report
- Maximum waiting times
- Waiting times are available in Institute information board.
- Waiting times are kept according to government decree - Maximum set by government.
- There are currently no standard means of measuring waiting and throughput times.
- The center records waiting times at two institutional levels:
1- Regional:
2- National: Ministry of Health oversight.
-Waiting times on the website for several tumors: breast, prostate and bowel cancers (more to be added). - Waiting and throughput times are recorded and published on website,
-Regional level maximum waiting times.
-No consequences regarding reimbursement.
 Average overall waiting time before first visit 9.1 days 1.54 days 12 days 7 days not available 21.8 days Unknown 9.6 days
 Average waiting time from first visit to diagnosis 9.1 days. Majority patients already have a diagnosis when they come to the first visit. 20 days 14 days Average not available, depends on pathology result (availability for pathology result is established by law and is maximum 30 days). Not available Not available. Not available
 Average waiting time diagnosis-start treatment Not available 6.53 days Not available 7 days Not available 19.7 days 14 days 12.6 days