Download EXECUTIVE SUMMARY

Vision for Comprehensive Care
for (Name disease)
Note to members of the Network of Rare Blood Disorder
Organizations
This document is based on the Vision for Comprehensive Care for people with
hemophilia and other bleeding disorders developed by health care
professionals and patients following the “Winnipeg II Conference” on
Comprehensive Care organized in 1999 by the Canadian Hemophilia Society.
It is intended as a template to be adapted and proposed as official policy by
each of the disease groups in the Network in consultation with their medical
advisors.
Accordingly, specific references to bleeding disorders have been removed.
The realities of each of the diseases may mean that certain aspects of this
document, originally developed with bleeding disorders in mind, are
inappropriate. Conversely, key elements may be missing. It is, nevertheless,
a good starting point.
David Page
July 26, 2004
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EXECUTIVE SUMMARY
PURPOSE
In recent years, comprehensive care has come to be increasingly accepted as
the standard for the delivery of care for people with (name disease) in
certain countries. As (name organization) looks toward the future of medical
care for (name disease), it wishes to capitalize on the best that the
comprehensive care model has to offer, while emphasizing wellness.
Providing the best quality of life possible for people with (name disease) and
their families will be achieved through three mechanisms:
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high quality medical care, delivered within the model of comprehensive
care;
high quality blood products and other drugs; and
high quality research.
This document reflects the vision of comprehensive care which is believed to
offer the greatest opportunity for wellness among those with (name disease),
within the context of Canada's health care realities. The continued provision
of high quality blood products and other drugs, and the improvements in
treatment through research complement the care model which is outlined in
this document.
HIGHLIGHTS
As indicated above, the vision of comprehensive care for people with (name
disease) is built on the most efficacious models currently in use. The vision
which is described in this document reflects a framework of care, rather than
a specific model of service delivery. Thus, comprehensive care may be
delivered in a variety of ways which allow each region to accommodate to the
geographic, demographic and cultural realities of its patients. The framework
of care outlined in this document may differ to a greater or lesser degree
from what is experienced by patients in comprehensive care programs across
the country. There are, however, five themes—national patient registry,
standards, evaluation, patient participation and community outreach—which
are both paramount and consistent in the vision of comprehensive care in the
future.
National Patient Registry
With a disease such as (name disease) which is rare and its treatment
complex and evolving, a national registry of all known patients is critical to
conducting research and assessing the outcomes of treatment protocols and
accepted standards of care. It is also essential to the proper planning of
health services, including the provision and distribution of fractionated blood
products.
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Standards and Evaluation
Standards of care (or treatment guidelines) (have been or will be) developed
for the care of people with (name disease). These standards include medical,
nursing, and social work care, as well as care team operation.
Comprehensive care programs, whether located in hospital or community
settings, will be evaluated regularly, through an accreditation process, to
ensure that these standards are being maintained.
Patient Participation
Patient participation is incorporated at two levels. First, the patient and/or
parents are involved in the development and implementation of the individual
care plan. Second, patients are involved in the management of the
comprehensive care programs, in the areas of planning services and budgets,
reviewing quality assurance and other management information at a
collective level, proposing and evaluating research projects, and participating
in the accreditation process. In many cases, treatments will be administered
at home by the patient or a family member.
Community Outreach
In some circumstances, particularly in outlying regions but also perhaps in
some urban centres, family physicians may be the primary care providers
with support and consultation provided by the comprehensive care team. In
some instances, this will reduce the direct care provision of comprehensive
care programs. Instead, the programs will assess patients and prepare care
plans to be implemented by patients and their local physicians. Members of
comprehensive care teams will provide the necessary training and support to
family physicians.
Comprehensive care programs will authorize the use of blood products or
substitutes. While some of the medical care may be delivered at the local
level by family physicians, all blood products and supplies for home infusion
will be accessible only on the authorization of a physician in consultation with
the comprehensive care program. In this way, the use of blood products and
their substitutes can be monitored to facilitate efficient recall of products as
necessary and to ensure the most appropriate use of products.
IMPACT
The concept of comprehensive care has already demonstrated its
effectiveness in improving the quality of life for people with other rare blood
disorders which are complex to treat, hemophilia and other bleeding
disorders being the prime examples. The system of comprehensive care
which is proposed in this document is expected to result in additional reduced
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costs to Canada's health system and social safety net. As well, greater
contribution to society by people with (name disease) is envisioned through
increased participation in the workplace. More specifically, the anticipated
impacts are:
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increased efficiency and effectiveness of use of blood products because
of care close to home and authorization by a comprehensive care
physician as part of the patient's overall care plan;
reduced use of health services through greater prevention of (name
symptoms) caused by (name disease);
reduced use of health services through the prevention of the
complications and side effects of the use of blood products through
appropriate dosage and close monitoring;
increased productivity through fewer days lost from school or the
workplace because of an emphasis on preventative strategies and care
delivered close to home;
increased productivity through reduced strain on family members,
particularly those who are care givers, resulting in increased
participation in the workforce and/or fewer days lost from the
workplace; and
reduced use of social services among people with bleeding disorders
and their families.
CONCLUSION
The vision of comprehensive care is designed to provide the best quality of
life possible to people with (name disease) and their families. Such results
will be realized by operating according to agreed-upon standards of care,
incorporating patient participation at the individual and comprehensive care
program levels, providing care close to the person with (name disease), and
monitoring the use of blood products to ensure the most appropriate use.
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(NAME DISEASE)
Include brief description of the organization, the disease and a history of its
treatment in Canada and around the world, including key discoveries,
especially as they support the concepts to be promoted in the document.
It is essential to establish standards of care. Patients should expect common,
high quality standards across the country, although these may be provided in
different ways in different regions. They should expect that their care is
transferable with minimum disruption and that there is good support for
home treatment, monitoring, supervision, and education.
This document outlines a vision for comprehensive care which will meet the
needs of people with (name disease) and their families over the next decade,
including :
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national standards of care for people with (name disease);
components of adequate comprehensive care;
an evaluation strategy to ensure that standards of care have been
implemented.
STANDARDS OF CARE
Introduction
The type and range of services provided to people with (name disease) has
changed considerably over the last 20 years. No one can foresee what other
forces will affect the care and treatment of people (name disease) in the
future. Therefore, a set of overarching principles and national standards of
care have been developed to guide comprehensive care programs over the
next decade.
Principles
The following set of principles of comprehensive care have been endorsed by
the (name organization):
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comprehensive care programs will be provided in all provinces;
an anonymous national patient registry will be created to gather
pertinent information on health outcomes and support research into
omproved treatments;
where indicated, patients and and/or their family members will be
trained to administer treatments at home;
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comprehensive care programs will have a mechanism in place to
receive, act upon and provide feedback to input and recommendations
from patients;
people with (name disease) will be able to move freely within Canada
and have access to consistent, high-quality comprehensive care
services;
treatment and services will be provided at the home community; only
highly specialized services requiring unique facilities will be
centralized;
conflict resolution processes, for patients and care providers, will be
developed and implemented within each province;
Medical Directors, Nurses, Social Workers and (list other required
health care professionals) will follow the detailed national standards of
practice for their respective professions. These standards will be
endorsed by the Medical and Scientific Advisory Committee and the
Board of Directors of the (name organization);
quality assurance will be monitored through an accreditation review of
programs every three years;
adequate, reliable, dedicated and independent funding that is
controlled by the comprehensive care programs is required to ensure
that standards are successfully implemented;
staff will be well trained in the management of (name disease) and
have sufficient dedicated time;
high quality blood products and other drugs will be provided to all
patients in an affordable manner;
surveillance of blood products will be structured so that recall and
patient notification can be done quickly and efficiently.
Standards
Standards of care are necessary to ensure quality and consistency of services
provided across Canada; however, all patients are different and the
treatment of (name disease) is constantly evolving as knowledge is gained.
Therefore, standards must be flexible. It is understood that the standards will
meet the principles outlined above.
Implementation
Comprehensive care services for people with (name disease) are built around
a team of professionals with expertise in the area. They work together and
with the patient to provide continuity in multidisciplinary, multifaceted care,
and to promote the health and well-being of the patient. The major
emphases are :
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education of patients who contribute to their own care;
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aggressive maintenance, early intervention and rehabilitation to
reduce the impact of (name symptoms);
anticipation and prevention of physical, social, vocational and
psychosocial problems;
assistance and encouragement to the patient to lead as independent
and normal a life as possible.
Core Services
A) Diagnostic Services
Diagnosis of (name disease) should be made as soon as possible. In cases
where there is no known family history, tests to confirm diagnosis should be
conducted when such a disorder is suspected. Where diagnosis is complex,
expert diagnostic services should be centralized, and family physicians
educated as to their existence so as to expedite referral.
B) Education
Once a diagnosis of a (name disease) has been made, the patient (adult
patient or adult care giver for a child) should receive education about the
disorder and its treatment, including potential complications. The patient
may need time to adjust to the diagnosis, especially if there has not been a
family history of such disorders. However, as soon as patients are ready for
more information, in-depth educational sessions should be conducted to
teach the patients about their specific disorder; the treatment options,
complications and their management; home treatment if applicable;
nutrition, exercise, stress management and risk management.
As well as instruction about the disorder itself, the patient should receive
information about how the comprehensive care program operates, the
responsibilities of each member of the care team including the patient, and
supports that are available to the patient in the community, and from (name
organization). The role of the family physician should be discussed at this
time.
All of the information should be provided in language which is easily
understood by the patient and in a way that is sensitive to his or her culture.
Adequate time should be available in each educational session for the patient
to ask questions and to perfect the practice of techniques used in the home
management of bleeding disorders.
In addition to education for the patient, the other health care professionals
involved, such as the family physician, should receive instruction from the
comprehensive care team. The information should include training in
treatment protocols and techniques, the importance of early intervention for
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acute episodes, pain management and when and how to consult with the
comprehensive care team.
C) Therapeutic Services
All patients should receive a comprehensive evaluation at least (x times) a
year. After the evaluation, the team should meet with the patient to develop
a care plan jointly. A detailed report should be generated which documents
the current status of the patient, any changes since the previous visit, the
amount and type of blood product or drug used over the previous interval,
and plans and goals for the future. The report must be shared with the
patient and the family physician.
i) Medical Assessment
Medical history and physical examination should be appropriate to age and
stage of growth and the development of the patient. This assessment should
be targeted to the specific disorder and its complications, blood product use,
reactions to treatment products and possibility of primary or secondary
infection at infusion sites. The comprehensive care team and the family
physician should also ensure that the patient receives an annual, regular
physical examination in addition to the examination related to (name
disease). The responsibility for conducting this examination should be
included in the patient's care plan.
ii) Nursing Evaluation
The patient's and family's (and other caregivers') understanding of (name
disease), its management and potential complications and determination of
educational, support and treatment follow-up needs should be assessed.
Consideration should be given to the patient's developmental stage, cultural
and educational background, and individual and family characteristics that
might affect a clear understanding of the disorder and its management.
iii) Psychosocial Evaluation
This will include an assessment of coping skills, specific stressors, family
structure, social support systems, and education and vocational guidance.
Referral to other disciplines, e.g., psychiatry and vocational counselling,
should occur as required.
iv) Genetic Counselling
A detailed family history should be obtained and included in the patient's
health record. Education and discussion about the mode of inheritance,
carrier testing and family planning should be conducted in an ageappropriate manner with each affected family member.
v) Laboratory Evaluation
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Periodic laboratory tests must be performed including complete blood count,
screens for known blood-borne pathogens, basic chemistry panel (including
liver function tests), and urinalysis. Tests will be ordered at the discretion of
the physician, with the informed consent of the patient.
D) Provision and Monitoring of Blood Products and Supplies
All blood products and supplies for home infusion will be accessible to
patients on the authority of a physician in consultation with the
comprehensive care program. The comprehensive care program is
responsible for keeping records of distribution including type of product,
supplier, lot by number and date issued regardless of the prescribing
physician. The goal of this monitoring program is to facilitate efficient recall
of products, as necessary, notification of the patient in case of recall, and to
ensure appropriate use of product.
E) Home Infusion
When blood products such as (name class of products) are indicated on a
regular basis, a successful home infusion program is critical to the
effectiveness of the comprehensive care program. Home treatment through
self-infusion, or infusion by a family member, is the most efficient method of
treating (name disease). Early treatment reduces the risk of complications.
The nurse coordinator is key and must work with patients to monitor the
appropriate use of blood products and record use. Specifically, successful
home care requires:
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culturally sensitive patient education and support for home infusion,
both in the hospital and in the home. Patients and their caregivers
should be instructed in proper home infusion procedures, recording of
appropriate blood product usage, and potential adverse reactions;
annual evaluation of the home infusion program for each patient to
assure correct technique, and to evaluate the outcomes of the
treatment.
F) Psychosocial Services
Services will be consistent with the standards and criteria for care of people
with (name disease) and their physical and/or psychological consequences.
Services will be available to all patients, families and caregivers. They should
be appropriate to the age and development of the patient. Support groups
for patients and/or families, in addition to or in cooperation with local
chapters of (name organization), should be available. Bereavement
counselling will be coordinated or provided, as needed. Stress management
for staff, as well as patients, families and caregivers will be offered.
Chaplaincy services will be available within the hospital if requested.
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G) Women's Issues
i) Gynaecology and Obstetrics
Women with (name disease) should receive routine gynaecological and
obstetrical evaluation. Specific attention should be paid to complications of
menarche, ovulation, pregnancy and menorrhagia. (Is this an issue?)
ii) Genetic Counselling - Women affected by (name disease) and carriers or
potential carriers, as well as their partners, should receive genetic
counselling. Information about carrier testing, prenatal diagnosis and family
planning will be available. This should be done in a confidential and culturally
sensitive manner. The emotional impacts of these issues should be
recognized and appropriate support made available.
H) Allied medical specialist services
A full range of medical and allied medical specialist services will be available
for referral to those patients and partners requiring such care. In large
programs, every effort will be made to have these services coordinated
within the program or as close, both physically and temporally, as possible.
I) Outreach
Education must extend beyond the walls of the hospital and into the greater
community included within the boundaries of those served by the program.
Ongoing education for patients and their families, school educators, as well
as health care providers in outlying hospitals or clinics must be provided. All
efforts to provide education in the language of the patient must be made.
i) Significant Others
Culturally sensitive education about (name disease), its treatment and
complications should be provided to those significant to the patient, if so
directed.
ii) Risk Management
Information about risk management (name disease) and possible subsequent
disorders (e.g., hepatitis C or name other possible complication) should be
available in an understandable and sensitive manner to all those who desire
it. It should include education on issues such as universal precautions,
nutrition, family planning, exercise, and stress management. Teaching should
be done by trained professionals in a confidential, culturally sensitive
manner.
iii) Staff Education
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Education of other health care providers should include family physicians,
public health nurses, emergency department personnel, and personnel from
in-patient units. Continuing staff education should include information about
(name disease), their complications and issues facing the patients, as well as
treatment modalities and case management. Experience in working in a
patient focused environment should be mandatory.
Staff should be encouraged to pursue excellence through ongoing attendance
at conferences and seminars.
J) Referral Services
Patients may require consultation with various specialists. It is not foreseen
that these professions will be attached to the program on a full time basis
but that a referral network will be set up. Those agreeing to be part of the
network should be trained in basic treatment procedures for (name disease)
and should make every effort, whenever possible, to see the patient during
regular assessments.
K) Case Management
Since coordination is one of the hallmarks of the care of a person with (name
disease), a case manager (likely the nurse coordinator) is required to ensure
that:
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the needs of the patient are clearly identified;
the patient sees the appropriate specialist whenever necessary;
the visits are planned for optimum benefit and minimal disruption for
the patient;
caregiver team members and their skills are used effectively and
efficiently.
The case manager is available for inquiry during normal working times and
one person in the program will be available by pager at all times 24 hours a
day, 7 days a week. Such a service is crucial when acute episodes can arise
which require immediate expert care often beyond the expertise of
emergency room personnel. The case manager is responsible for providing
information to patients as needed for decision-making and involves them in
their plan of care.
L) Program Coordination and Management
It is essential that one person accept responsibility for the management and
coordination of the program. This is especially important when many of those
providing care, especially in smaller centres, will not be full-time members of
the team. This is complicated by the fact that much of the care is provided in
the patients' homes and at their discretion. The role of the coordinator is:
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to keep records of the patients and their visits;
to ensure that multidisciplinary team meetings are held and minutes
recorded;
to schedule patient visits, depending on their needs;
to communicate with patients;
to facilitate peer support mechanisms such as a Buddy System for new
parents;
to keep records of the blood product ordered and authorized;
to assist in the development of the program budget;
to work with the directing physician;
to develop plans with staff for ongoing education;
to facilitate the care given to patients;
to assist in the recruitment and orientation of staff members;
to assist in the evaluation of staff.
M) Research
Research includes any use of patient data other than for the purposes of
monitoring treatment of the individual patient. Research is a critical part of
the care of people with (name disease). A comprehensive care program will
participate in basic and clinical research. The ethical research protocols of the
affiliated university will be adhered to. Patients will participate in research
projects only if they give informed consent. Patients will have access to
published research findings, and may ask for explanations of the findings as
they relate to them. No patients will be denied care or treatment because
they choose not to participate in research. As (name disease) is rare, a
national patient registry is critical to the generation of sufficient data to
further knowledge.
N) Coordinated Hospital Care
On those occasions when patients are seen in the emergency department or
are admitted to a hospital ward, there should be a member of the team
available to liaise with the hospital and work with the staff to provide
continuity of care.
RESOURCES REQUIRED
A) Space
A space which is functionally convenient, wheel chair accessible, in a quiet
area and provides privacy of person and security of documents is needed.
The space should be located in close proximity to a laboratory and/or blood
bank.
B) Equipment
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The medical equipment required is similar to an ambulatory medical clinic.
Staff will need spreadsheet, data base and word processing and electronic
transfer capability. A fax machine, telephone, telephone answering and
paging equipment are also necessary.
C) Human Resources: The Comprehensive Care Team
The comprehensive care team consists of a variety of members of the (name
disease) program as well as the patient. The positions and their respective
responsibilities are outlined below, beginning with the patient and followed
by the professional positions from the comprehensive care program.
i) Patient
The adult patient or his/her adult caregiver is a key participant in the
planning, management and evaluation of treatment of the bleeding disorder.
Responsibilities will include:
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participation in annual assessments and development of care plans;
following the agreed-upon treatment plan;
reporting and recording of acute episodes and use of blood products as
specified in the treatment plan, e.g., completing "treatment logs" and
submitting them to the nurse coordinator or contacting the nurse
coordinator when an acute episode occurs;
reporting adverse reactions to treatment or complications of either the
disorder or the treatment in a timely manner;
asking for clarification when uncertain about managing the disorder.
ii) Medical Director
A physician familiar with (name disease), ideally a (name specialty), will be
the Medical Director of the program. Responsibilities will include:
 arranging for medical services;
 supervising the day-to-day operations of the program;
 selecting and supervising the appropriate therapy for the control and
prevention of acute eposodes and other medical problems related to
(name disease);
 monitoring the overall health of the patient as the most responsible
physician;
 working with the nurse coordinator/manager to develop and
implement professional and administrative policies of the program;
 contributing to the multidisciplinary care plan for the patient.
iii) Nurse Coordinator
The nurse coordinator is key to the efficient functioning of the program. It is
critical to have a nurse coordinator with sufficient time dedicated to the
program. Responsibilities will include:
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coordinating activities of team members to ensure that there is a
multidisciplinary plan of care for each patient;
providing instructions to patients in home infusion and home
treatment;
conducting nursing assessments on all patients and preparing a
nursing care plan;
reviewing patient or family home infusion technique annually;
providing telephone support and education to patients, caregivers,
family physicians and other health care workers;
administering therapies in the comprehensive care program as
prescribed by the physician;
working with the team to develop and implement professional and
administrative policies;
planning staff education;
assisting with the preparation of budgets and administrative reports;
authorizing the provision of blood products for self-infusion patients, at
the direction of the physician;
scheduling annual assessments and specialist consultations;
participating in the research initiatives of the program.
iv) Social Worker
The comprehensive care program will have a social worker with adequate
time dedicated to the program. Responsibilities will include:
 providing a psychosocial assessment of patients;
 providing continuing support, counselling and crisis intervention;
 participating in the development of the multidisciplinary care plan;
 providing supportive care and information about resources, advocating
for the patient in accessing these resources;
 providing support to colleagues as needed.
v) Clerical Support
The comprehensive care program requires a person to provide clerical
support to the team, particularly the nurse coordinator. (N.B. This clerical
support person may need to be shared with other similar rare blood disorders
requiring home treatment with blood products, a patient registry, etc.).
Responsibilities will include:
 maintaining of medical records;
 entering data;
 providing administrative assistance.
vi) Specialized Professional Services
Referral specialist will temporarily function as a team member, participate
with colleagues in multidisciplinary team meetings and contribute to the plan
of care for the individual patient. The Nurse Coordinator will make every
attempt to schedule appointments at mutually agreeable times.
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The specialists include:
 Dentist
 Rheumatologist
 Hepatologist
 Gastroenterologist
 Nutritionist
 Kinesiologist
 Immunologist
 Infectious disease specialist
 Specialized laboratory services
 Hematologist
 Pain management specialist
 (Add or subtract specialties as needed)
EVALUATION
Introduction
Standards without evaluation and accountability are unproductive. A process
of review which is intended to support and not penalize programs will create
a dynamic environment of trust and respect which will benefit both health
professionals and patients.
Goals
The goals of an evaluation process are:
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to ensure quality care for people with (name disease);
to verify the degree of compliance with national standards and, when
deficiencies occur, make recommendations for their correction;
to recognize compliance with standards when met;
to provide expertise for advice and guidance of administrators and
health care providers.
Philosophy of Approach
The (name organization) has no authority to either license or accredit
comprehensive care programs, though these are the two main avenues by
which accountability and evaluation can be implemented. Rather than
attempt to establish a licensing board through the (name organization), the
(name organization) will request that all comprehensive care programs be
accredited through the Canadian Council on Health Servicess Accreditation
(http://www.cchsa.ca/).
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The CCHFA mission states:
"The mission of CCHSA is to promote excellence in health care and the
effective use of resources in health services organizations nationally and
internationally in order to improve the delivery of health services. To achieve
its mission, CCHSA provides health services organizations with an
accreditation program based on national standards and knowledge
exchange. CCHSA recognizes that the ultimate beneficiaries of its work are
the people of Canada and beyond.”
The CCHFA can provide the (name organization) with the resources,
expertise and structure to carry out accreditations. Their accreditation is
required for all teaching hospitals and is widely desired by others. They are
already expanding their influence through evaluating community-based
services as a process for accreditation.
Funding
Using the CCHSA model, the cost for the outside evaluation teams are
covered by the facility requesting accreditation. The cost will be dependent
on the number of people on the survey team and how often the process is
used. Accreditation costs will be built into the budget of the comprehensive
care program and/or the hospital or society with which it is affiliated.
The (name organization) and the CCHSA will work together to create an
appropriate accreditation for comprehensive care programs.
The Evaluation
The accreditation review will consist of a variety of data collections. Program
and patient files will be reviewed, individuals who work as part of the
comprehensive care team will be interviewed, patients will be interviewed,
family physicians of patients will be contacted, professionals who provide
specialized services on referral for patients will be contacted and quality
assurance information will be reviewed. All of this information will be
collected by a team of peers who:
a) have the expertise to ensure the respect of the comprehensive care
program's personnel and patients; and
b) have received the necessary training from CCHSA to conduct such data
collection processes and interpretations.
Each of the accreditation standards will be evaluated based on the
information which is collected and a report will be prepared for the evaluation
steering committee at each site. The evaluation steering committee is an
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essential component of a productive accreditation program. The steering
committee:
i) prepares the materials and documents for the data collection team;
ii) ensures that people are available for interviews with the data collection
team;
iii) receives the report of the accrediting body as prepared by the data
collection team; and,
iv) recommends remedial action based on the findings of the review.
This evaluation steering committee should consist of at least two members of
the comprehensive care team; an equal number of patients, representing
both adult and pediatric patients as applicable; a member of the provincial or
regional (name organization) Board; a member of the body which funds the
comprehensive care program; and a representative of the provincial health
ministry, preferably the representative to the Canadian Blood Services. The
steering committee will also be responsible for the development of a report
for the purposes of accountability, as outlined below.
Accountability
Local chapters will work with the province and health care providers to
determine the type of comprehensive care service which meets their needs
and the national standards. Comprehensive care programs are then
accountable on three levels:
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to people with (name disease), their families and caregivers;
to themselves, as they have worked to meet the standards;
to the accrediting body which evaluated the program's ability to meet
the national standards.
To ensure these levels of accountability are met, a copy of the results of the
accreditation report should be distributed to the local (name organization)
chapter, the comprehensive care program, the provincial government as
funders of the program and the national (name organization). Such a report
would include any measures the comprehensive care program will initiate to
correct any shortcomings discovered by the accreditation team. Where there
is chronic failure to meet standards, appropriate pressure can be applied by
the provincial (name organization) chapter (with national backing) on the
provincial Minister of Health or other appropriate government health
administrators to ensure such a situation is corrected.
Accountability also implies recognition for outstanding performance. This can
be given in several ways:
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multi-year accreditation awards which distinguish degrees of
performance;
a national award presented at the annual (name organization) general
meeting, which would include a press release to local and national
news agencies;
a published report which would be circulated through (name disease)
and other news reporting networks.
Remediation
If a particular patient has a matter that needs to be addressed, the concern
should be addressed locally. Any concern not satisfactorily dealt with would
be noted in the accreditation team's report. The comprehensive care program
would then be obliged to initiate action to deal with the problem.
If such actions seem inadequate to the patient involved, then there should be
a local appeal procedure in place. The provincial chapter would stand with
such an individual for support and encouragement if the concern is deemed
valid. Through such a procedure, all grievances should be addressed.
A particular comprehensive care program may take issue with the report
published for its accreditation. A review process to which the program can
appeal must be in place. This provides a means of redress at a national level.
SERVICE DELIVERY MODELS
In all cases, people—patients and health care providers—are more critical
than the bricks and mortar of institutions. Therefore, comprehensive care
centres should be set up where they most benefit patients and where health
care providers have the interest and expertise.
Depending on the number of people affected by a disease, their
geographical distribution, the severity and frequency of symptoms and the
complexity of treatment, service delivery models will vary.
I. Designated National Program (where provincial systems cannot be
supported because of small numbers)
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Conference of Health Ministers appoints a seven-person Canadian
Comprehensive Care Advisory Board for (name disease) to develop
and oversee the system;
Small population provinces work with centres of excellence in larger
provinces;
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Conference designates centres of excellence which are responsible for
outreach to smaller centres and to designated physicians;
Blood product is issued only on the authority of the comprehensive
care program or a physician operating as part of the system;
Ministers within regions appoint a seven-member Regional Advisory
Committee accountable to them for planning, implementation and
evaluation of regional services;
This is a multilevel system linking all comprehensive care programs
and services together including physicians in remote areas;
The Regional Advisory Board determines the number, location and
level of comprehensive care programs to be put into place for the
region.
N.B. It may be feasible to treat several rare blood disorders which share
certain treatment features such as home treatment with blood products, in
one comprehensive care program, sharing both human and physical
resources, including specialized diagnostic laboratory facilities.
II. Designated Provincial Programs (where numbers programs in all
provinces)
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Official designation of provincial program and comprehensive care
centre(s)
Provincial Advisory Committee recommends strategies to the minister
to ensure maintenance of provincial standards and develop a Quality
Assurance program focused on patient satisfaction and outcome
measures;
Separate funding mechanism established by the Ministry to ensure
funds to allow comprehensive care programs to maintain provincial
standards;
Number of regional programs in province dependent on population;
Patient is registered at one of the designated centres in order to
receive blood products at no cost;
Regional centre is responsible for all services;
Each centre maintains a multidisciplinary approach;
Model provides for centralized purchasing power, control of use of
blood products, recall of products at risk.
(N.B. Each organization needs to begin to discuss their ideal model and to
begin identify those physicians who are ready and able to head up the
comprehensive care centres acrooss Canada.)
PATIENT PARTICIPATION MODEL
Patient participation in both planning and evaluation is an essential part of
the vision for comprehensive care in Canada.
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Patients include all those who use the services provided by the
comprehensive care programs, including people with (name disease), their
families and significant others. It also includes those in the community who
access the expertise of the professionals in the comprehensive care programs
to enhance the care they provide to people with (name disease) in their own
practices, such as family physicians, and school nurses.
Constructive cooperation between health care providers, the Ministry of
Health, and those who use the services of the comprehensive care programs
is necessary in order to establish and maintain high standards of care to
ensure optimal health and well being for people with (name disease).
Such cooperation could be initiated through the establishment of Advisory
Councils.
Advisory Councils should be set up with each of the comprehensive care
programs. Membership on the Council could include:
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two patients, at least one of whom uses blood products;
two health care providers, one of whom is the Medical Director;
one other interested person;
one representative from the Ministry of Health (possibly the CBS
representative).
This Council would be accountable to all those people it represents. Some of
the expected outcomes include:
 enhanced communications between major stakeholders;
 increased understanding and awareness of needs and expectations;
 collaborative planning and implementation of care and educational
services;
 efficacious use of all resources including blood products;
 improved advocacy;
 continuous quality improvement with an increased patient focus;
 improved health and the prevention of complications for those with
bleeding disorders.
The Council meets four time a year. Examples of issues discussed include
annual goals and objectives of the Program, patient advocacy,
implementation of new products, product use recording and reporting, and
implications for hospital redesign. All other members of the (name disease)
community are informed as to who the representatives are and are
encouraged to forward their suggestions and concerns through them.
Benefits include:
 enhanced understanding and appreciation of each other's roles;
 greater patient input into policies and procedures;
 greater patient choices re: treatment and products;
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increased patient focus of continuous quality improvement programs;
better use and sharing of limited resources.
Patients, health care professionals, and the Ministry of Health must work in
collaboration to provide accessible, affordable and appropriate health
services to all Canadians.
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