A Case for Patient Navigation for People with HIV/AIDS

Transcription

1 A Case for Patient Navigation for People with HIV/AIDS Page 1 of 46

2 Executive Summary Background In 2003, the Nova Scotia Strategy on HIV/AIDS recommended the development of a protocol for support and advocacy for persons with HIV or AIDS (PHAs). The AIDS Coalition of Nova Scotia (ACNS) contracted Pyra Management Consulting Services Inc. explore the feasibility of a patient navigation program for PHAs in Nova Scotia. This report is based on a review of formal and grey literature including articles from peer reviewed journals, reports and information from web sites as well as interviews with individuals involved in coordinating patient navigation programs in Nova Scotia, Quebec and British Columbia. This report was made possible by funding from the Nova Scotia Department of Health. Benefits of Patient Navigation/Case Management People with HIV/AIDS often require a complex combination of social and medical resources of over a long term period in order to manage their health. 1 People unfamiliar with these resources may not be aware of the services available to them and may not appreciate the need to access health and social services. 2 Patient Navigation, also called case management, is an effective and efficient means of managing the client s transitions through medical and social services networks. 3 There are many examples of the benefits of patient navigation. The literature reports positive impacts such as lower costs, fewer hospitalizations, improved access to care, adherence to care programs, increased independence, less social isolation and longer life spans. 1 Other positive impacts of patient navigation include improved quality of care and patient satisfaction 2, Page 2 of 46

3 Patient Navigation for Persons with HIV/AIDS in Nova Scotia The literature supports the value of patient navigation for people who experience long term, chronic and complex illnesses such as HIV/AIDS. The experience elsewhere is that there are numerous benefits to individuals, families, health professionals and the health system when such programs are implemented for PHAs. Experience in Nova Scotia with the Cancer Care Nova Scotia Patient Navigation Program has demonstrated the value of the approach in the Nova Scotia context. To move forward with an HIV/AIDS patient navigation program in Nova Scotia, it is critical to begin by building on the successes of the past to ensure a solid foundation for the program. The following series of recommendations are intended to provide guidance for the development of a patient navigation program for HIV/AIDS in Nova Scotia. Recommendation 1 Develop an HIV/AIDS Patient Navigation Program that is closely aligned with the Cancer Care Nova Scotia Patient Navigation Program both in terms of program design and ongoing program operations. Recommendation 2 Use the opportunity of adapting the Cancer Care Nova Scotia Patient Navigation Program model to evaluate the transferability of the model for case management of other long term chronic illnesses. Recommendation 3 Develop a multi-stakeholder planning team to design an HIV/AIDS Patient Navigation Program. The group should work in close collaboration with the Cancer Care Nova Scotia Patient Navigation Program and build the program based on the experiences of the cancer program. In addition to defining the program parameters, the group will need to identify the most appropriate organizational infrastructure to support the operations of the program. Page 3 of 46

4 Recommendation 4 Allocate a dedicated staff person to lead and support the program planning and evaluation development work of the multi-stakeholder planning team during the planning phase. Recommendation 5 Ensure that adequate resources are allocated to support both the development and implementation phases of the HIV/AIDS Patient Navigation Program to ensure proper planning precedes program start-up and to ensure that program expectations match allocated resources. Recommendation 6 Adapt the evaluation framework from Cancer Care Nova Scotia s Patient Navigation Program for the HIV/AIDS Patient Navigation program. Recommendation 7 Collect baseline data before the program is implemented to provide a benchmark against which changes due to the program may be measured. Page 4 of 46

5 Table of Contents Executive Summary... 2 Table of Contents... 5 Introduction... 6 Rationale for a Patient Navigation Approach for HIV/AIDS... 7 Effectiveness of Case Management... 9 A Closer Look at Case Management What Is Case Management? Examples of Models of HIV/AIDS Case Management Ryan White Care Act: Case Management Programs in the United States AIDS Vancouver Cancer Care Nova Scotia: Patient Navigation Program Nova Scotia Workers Compensation Board Case Management Program The Role of Case Managers/Patient Navigators Patient Navigation for HIV/AIDS in Nova Scotia Building Capacity for Chronic Disease Case Management in Nova Scotia Invest Resources in Planning Ensure that Program Expectations Match Resources Adapt and Implement an Evaluation Framework Summary Appendices Appendix A: Nova Scotia Strategy on HIV/AIDS Recommended Action # Appendix B: Cumberland County s (New Jersey) Multi-Step Case Management Process Appendix C: Oregon s Ryan White Three Tier System and Components Appendix D: AIDS Vancouver Case Management Appendix E: CCNS Program Goals and Objectives Endnotes Bibliography Page 5 of 46

6 Introduction In 2003, the Nova Scotia Strategy on HIV/AIDS recommended the development of a protocol for support and advocacy for persons with HIV or AIDS (PHAs). The Strategy identified the patient navigation model implemented by Cancer Care Nova Scotia as a potential model for consideration (Appendix A contains the full recommendation from the Strategy). As part of their contribution to the implementation of Strategy, the AIDS Coalition of Nova Scotia (ACNS) undertook a project to explore the feasibility of a patient navigation program for PHAs in Nova Scotia. ACNS contracted Pyra Management Consulting Services Inc. to review formal and grey literature about patient navigation and case management and to synthesize the literature into this document. Literature reviewed for the report included articles from peer reviewed journals, reports and information from web sites as well as data from interviews with individuals involved in coordinating patient navigation programs in Nova Scotia, Quebec and British Columbia. The documents reviewed address case management and patient navigation for people with medical conditions that require long term often complex care such as cancer, mental health patients, frailty in the elderly and HIV/AIDS. Patient navigation refers to a managed system of care by professionals such as social workers or nurses, or paraprofessionals such as peer counselors, volunteers and home workers. Patient navigation is also known by the term case management, as well as a variety of other terms such as clinical coordination, care coordination or follow-up nursing. 2 The term "patient navigation" first appeared in medical literature in Throughout this report, the terms case management and patient navigation are used interchangeably to refer to services that can be provided in a variety of sites such as hospitals, community-based organizations, social service agencies, health departments, and advocacy organizations. Services vary from Page 6 of 46

7 providing assessments of client needs and referrals for services to the actual provision of services. Patient navigators or case managers typically serve as links to a range of services needed by individual clients. Rationale for a Patient Navigation Approach for HIV/AIDS People with HIV/AIDS often require a complex combination of social and medical resources of over a long term period in order to manage their health. 1 A person unfamiliar with these resources may not be aware of the services available to them and may not appreciate the need to access health and social services. 2 Many clients cannot access or interpret the health care delivery system to their best advantage. Case management is an authorized service which helps clients and their families make informed decisions based on the client's needs, abilities, resources and personal preferences. 5 From the initial diagnosis after which the client requires a considerable amount of education and support, through the various stages of treatment for HIV/AIDS, a patient navigation approach tries to address the possibility that the client may get missed in the system. Patient navigation is an effective and efficient means of managing the client s transitions through medical and social services networks. 6 Patient navigation systems have been successfully used with cancer patients in Nova Scotia and have also been used successfully with HIV/AIDS patients in the United States and in Canadian locations such as Montreal and Vancouver. There are many similarities between HIV/AIDS and cancer in that each begins with the initial shock of diagnosis and the client often has a great need for education and support during the initial stages; there is a need for an intensive medical program in the beginning; and this moves to a long term treatment program in a complex environment. There are also emotional difficulties associated with the diagnosis and often access to psychosocial services is essential to maintain the patient s health. 7 Page 7 of 46

8 The many issues associated with HIV and AIDS require a comprehensive and coordinated approach to care. Where such programs exist, case management plays a central role in working with consumers to pull together a fragmented system of service provision in order to ensure that consumers and their families receive the medical and human services that they require. 8 The need in Nova Scotia for a patient navigation model was clearly established in the broad consultations held to develop the Nova Scotia Strategy on HIV/AIDS. The stakeholders acknowledged the variety of problems currently experienced by PHAs in Nova Scotia and recognized that a patient navigation system could effectively address many of the difficulties faced by the PHA community. The Nova Scotia Strategy on HIV/AIDS recognizes that the diversity of persons affected by HIV/AIDS requires a variety of measures to address the needs of the patients. In Nova Scotia there are barriers related to availability of services in rural locations; concerns based on sexual orientation; gender based concerns; cultural barriers for Aboriginals and other groups; lack of HIV/AIDS knowledgeable physicians and primary care providers; concern over the provision and affordability of medications, income security and housing; and a lack of support for holistic care programs and services. 9 The Nova Scotia Strategy on HIV/AIDS notes that a coordinated approach to care, treatment, and support will ensure that people with HIV/A1DS have equitable and seamless access to services; that models and tools are available for individualized treatment and case management; that treatment strategies are centred on quality of life as well as survival; and that all PHAs have access to treatment trials available in Canada. 9 Page 8 of 46

9 Effectiveness of Case Management The literature supports case management as a means of improving patient outcomes for chronic long term care patients. Of the few criticisms of case management in the literature, most concerns center on the need for further study of the effectiveness of case management particularly as it relates to cost effectiveness. 1 The lack of information about cost effectiveness was evident in the literature search conducted for this report. Although a few items reported cost savings as one of a list of benefits from case management, there are very few well-designed studies of cost implications for case management. The available documents about the economic impact of case management indicate that there are economic benefits to this approach In one study, the use of nurse practitioners was viewed as reducing costs because they were able to forestall hospital admissions and readmissions, decrease prolonged lengths of stay, provide medically supportive outpatient treatments, care for clients at a low cost per client per year, and attract professional and nonprofessional volunteer services and donations. 13 A few studies have attempted to quantify cost savings by determining the decreased length of stay in acute care institutions as a result of case management. A case study of nursing case management in a small rural hospital found that length of stay decreased by 1.7 days due to case management, saving an estimated $65,932 during the study period of sixteen months. 12 The Hartford Physician Hospital Organization in Connecticut reported an average savings of $3,963 per patient in the first year after implementing a case management program. The Johns Hopkins Hospital in Maryland implemented a case management pilot program to which $1.3 million in charge savings were attributed. 10 Another study conducted by a non-profit health organization in Minnesota found that since beginning a case management program, the per member cost dropped 24% and the hospitalization rate for patients participating in case management dropped 48%. 10 Page 9 of 46

10 Caution must be used when reviewing cost savings from these studies, because the models being evaluated were all different and the context in which the models were implemented may differ significant from the Nova Scotia context. However, what limited information is available appears to indicate that there may be cost savings associated with case management. There are many examples of benefits of patient navigation other than cost savings, both generally and specifically for HIV/AIDS. The literature reports positive impacts of case management such as fewer hospitalizations, improved access to care, improved adherence to care programs, increased independence, less social isolation and longer life spans. 1 Other positive impacts of patient navigation include improved quality of care and patient satisfaction. 2 Page 10 of 46

11 A Closer Look at Case Management The concept of case management or patient navigation is not new. There are numerous examples of case management programs throughout North America. This section provides a description of case management and then briefly outlines a few example case management programs that have been implemented successfully elsewhere. What Is Case Management? In most cases, a patient navigation or case management system is one in which a trained professional coordinates the care and transition of a patient through a series of long term medical treatments and connects them with community supports. Case managers must try to reduce service, agency, and administrative barriers to ensure that clients obtain services as quickly as needed and in a manner satisfactory to them. 15 The case manager is able to ensure that patients follow treatment programs; acts as a liaison between the various medical professionals that patients are required to visit; and provides education and support to the patient and their families. The case manager provides the direction and experience for the patients to make the best decisions about which options they should choose during the course of their treatment. In short, patient navigators do not just assist patients through the healthcare maze in a more timely fashion, but they also play a critical role in improving patients psychosocial well-being and quality of life, and enabling patients to be active partners in their own care. 16 Case managers are often from the nursing profession, but are frequently trained social workers. The role of the manager/navigator is the same: each provides support and guidance to the client to assist them through the process of living with their illness. The main components of case management are client-centered services that link clients with health Page 11 of 46

12 care, psychosocial and other services to ensure timely, coordinated access to medically appropriate levels of health and support services, continuity of care, on-going assessment of the client s and other family members needs and personal support systems, and inpatient case management services that prevent unnecessary hospitalization or that expedite discharge, as medically appropriate, from inpatient facilities. 5 Examples of Models of HIV/AIDS Case Management Ryan White Care Act: Case Management Programs in the United States Case management has developed in the United States in response to the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of The CARE Act provides funding for case management as a means of best addressing the needs of PHAs. However, the legislation did not stipulate case manager qualifications or service delivery models and therefore each locality developed their own system of case management. Consequently, there is little consensus about what HIV/AIDS case management is in the United States and describing HIV/AIDS case management as it is practiced has become a challenge. 17 Case management standards vary from state to state and some states have quite different models of case management being delivered within the same city. The US Department of Health and Human Services describes the key activities of Ryan White funded case management as: initial comprehensive assessment of the client s needs and personal support systems; development of a comprehensive, individualized care plan; coordination of the services required to implement the plan; client monitoring to assess the efficacy of the plan; Page 12 of 46

13 periodic re-evaluation and revision of the plan as necessary over the life of the client; and client-specific advocacy and/or review of utilization of services. 5,18 Despite the variety of case management systems developed in the United States to address the Ryan White CARE Act, there are a number of similarities in each program, based on the above components. The first similarity is the series of activities of the overall process. The first step is generally an intake service, where the client is newly diagnosed or referred to a case management program. The second step is an assessment stage where the client s condition and level of care is determined. This assessment is generally performed by a medical professional, such as a Registered Nurse. Next, a service plan is developed based on the assessed need of the client that provides the appropriate level of care and coordination of the patient through their various social, medical and educational needs. Case managers monitor the progress of the client through the service plan and re-evaluate the effectiveness and appropriateness of the plan based on the client s condition and needs. Many case managers also incorporate evaluations of effectiveness from clients to improve the system of case management. Case management systems also include provisions for the termination of a case management service agreement. 17,19,20,21 The client/case manager relationship may end for a variety of reasons, which may include non-compliance of the patient to follow through with treatments; the patient does not cooperate with the case manager and there is a period of inactivity between the two parties (general time frames are 6-12 months); the patient requests the termination; the patient moves; the patient becomes incarcerated; or, the patient dies. Appendix B provides an example of a multi-step case management process from New Jersey s Cumberland County HIV Services Planning Council. Page 13 of 46

14 In Oregon, PHAs are assessed according to their level of health using an Acuity Scale to determine the client service needs. They have adopted a three tier based service continuum of care that is similar to the Tier I, II and III classifications found elsewhere throughout the United States. Tiers range from basic need (Tier I) to more intense needs (Tier III). The assessed level of care in the Oregon program is also influenced by the individual s income level. All persons who make less than the Federal Poverty Level have services fully funded. Other services are provided at full or partial costs based on the client s ability to pay and level of health insurance. Ryan White funded programs are the payer of last resort for services. 22 The first tier includes Core Services which are essential medical and delivery services that promote physical well-being and are guaranteed services for all eligible persons living with HIV/AIDS. All services beyond the first tier Core Services require that the patient utilize a case manager for referral to services and programs. This enables the case manager to work with the client to determine the most appropriate services. The second tier provides Essential Support Services that attend to basic needs and enable patients to better access tier one Core Services. Essential Support Services include housing, transportation, emergency funding and access to care/treatment programs. Tier three services are for persons in advanced stages of HIV/AIDS who require more intensive care or other services essential to the patient such as legal advice, or child and home care. Appendix C provides more information about the three tiers in the State of Oregon s Ryan White funded programs. 23 Other similarities among case management programs in the United States are: the general use of operational guidelines or to address the need to provide culturally appropriate services to patients; provision of support and advocacy as well as outreach and referrals; and recognition that case management is more effective if the patient is educated and informed so that they are able to take an active role in the decision making process. 24 Page 14 of 46

15 Case Management Standards Since program standards were not provided by the Ryan White CARE Act, case management standards developed independently among the various service providers in the United States. There is a measure of congruence between the various standards established to provide Ryan White CARE services. Program components, processes and guidelines are generally similar among the service providers. Other standards are: requirements of education and training for case managers; case loads; and the types of professionals who provide the services. Page 15 of 46

16 Case Management Education Regardless of their professional background, case managers are expected to have a college level of education and related experience providing services to PHAs. Generally, persons without a college education but with extensive experience may also be case managers if they complete certified case management training. Many states also require yearly professional development for case managers. 24 Case Loads Case loads for case mangers across the Ryan White Act programs differ due to needs and also the variety of program models available. Some case managers deal exclusively with certain groups that require more intensive effort to manage the patient such as those newly diagnosed, recently released inmates or patients with difficult behaviours due to mental health or substance abuse issues. 25 Other case managers who deal with non-intensive need clients generally have a client load based on the patient s required level of care. On intake assessments, patients are categorized according to need (low, medium and high) and are subsequently provided with services related to their needs (Tier I, II or III). Case managers are matched with clients based on 25% of low need, 50% medium need and 25% high need. 26 Caseloads under Ryan White programs are typically between clients at a time. 27 Service Providers Another aspect common in many of the case management programs is the utilization of a case management team. This includes a supervisor, case managers and support staff. Some programs also utilize non-professional peer mentors that assist patients and case managers with tasks such as completing forms, coordinating transportation and providing other essential but not professional services. 28 The need for supervisors and support staff was also highlighted in non-american literature. A frequent complaint of case managers when support Page 16 of 46

17 staff was limited or not available was that time expended on the necessary paper work decreases the number of patients they are able to manage. 5 Some States, such as Oregon, have determined that medical professionals must be involved in the preliminary stages of intake and assessment. After assessment, community based or medical based case managers may be used to co-ordinate the services for the client. AIDS Vancouver AIDS Vancouver has a progressive model of case management that they have developed to effectively manage a case load of 1,400 clients with a staff of five. This model was developed in response to the need for better case management in Vancouver, while acknowledging that they could not effectively cope with the high case load through a standard one case manager with clients model. The current model of case management was adopted in 2001 and transformed the way they deliver service. Previously, there were no initial assessments, and client needs were not being met. AIDS Vancouver established a two-tier case management system that is based on the social determinants of health. The first tier is Access case management provided by two case managers in a drop-in environment. They assess needs and provide immediate assistance and direction. The second tier is Intensive case management provided by three case managers who address multiple needs over long periods of time. The interaction is intensive in the first few months as many concrete steps are taken while the client becomes more stabilized. Ongoing care beyond the Intensive level is provided through the Access case managers. An undercurrent to this system is an educational component of prevention case management aimed at altering the risk taking behavior of PHAs. To compare this system with a typical Ryan White program, at 40 clients per case manager, it would require 35 case managers to address the same number of clients currently being Page 17 of 46

18 managed by 5 case managers AIDS Vancouver. The key elements of success of this model (based on an interview with Director of Client Care/Director of Client Services at AIDS Vancouver) are: The two stage system (Access and Intensive) with a prevention education focus. Greater ability to do home visits. This enables the Intensive case managers to reach more people than this could from the office. It also permits a more accurate evaluation of the needs of these clients. The presence of a supervisor that is slightly removed from case management. This provides a direct and understanding sounding board for the case managers, which is essential to improving staff morale. For more information on AIDS Vancouver, see Appendix D: AIDS Vancouver Case Management. Cancer Care Nova Scotia: Patient Navigation Program Cancer Care Nova Scotia (CCNS) is a program the Department of Health initiated in 1998 to coordinate, strengthen and evaluate the cancer care system in Nova Scotia. The concept and need for patient navigation was identified early in the CCNS mandate by clinicians, patients, and survivors. Research and input from stakeholders early in 2000 identified the need for a service coordinator position, such as a case manager or patient navigator. In February 2002 in collaboration with three early adopter district health authorities, CCNS launched a Cancer Patient Navigation program. 29 For a complete list of the CCNS program goals and objectives, see Appendix E: CCNS Program Goals and Objectives. The evaluation of Cancer Patient Navigation in Nova Scotia established that the program was successful in benefiting cancer patients and their families with emotional support, education and provision of information as well as guiding the patient through the health system. Page 18 of 46

19 Additionally, the evaluation also established that the patient navigation system improved efficiencies in the use of clinical time for physicians, fostered communication and collaboration among health professionals and reduced duplication of services. The program has resulted in overall improvements to the continuity of care for cancer patients. Based on the results of the evaluation, it has been recommended that patient navigation be implemented in the remaining health districts. 30 Nova Scotia Workers Compensation Board Case Management Program Another Nova Scotia example of a case management program is found at the Workers Compensation Board, which offers a case management approach to disabilities. The program has been in place since 1992 and facilitates the return to work of injured or disabled workers. Case managers work with individuals and families to identify barriers to returning to work and then work with the client to develop strategies to address the barriers. The program has evolved since it was started, such that case managers take a holistic approach to working with clients to facilitate their return to work. Case managers have varied backgrounds, often nursing or social work, and provide counselling and referrals to a wide variety of medical and social services. Typically, case managers manage about 50 active clients at any one time, as well as about 25 less active clients (e.g. those whose claim is closed). The Role of Case Managers/Patient Navigators Health Canada s investigation of the navigator role found that although roles vary depending on the type of program, generally navigators perform functions within four main domains: coordinating care; providing education and information; supporting patients in making decisions; and to a lesser degree, assisting clients in self care. 1 Page 19 of 46

20 The evaluation of Cancer Care Nova Scotia s Patient Navigation Program describes the role of the patient navigator as follows: Clearly, the primary activity is to assist and support patients in their overall cancer journey. The role also encompasses activities designed to build the overall capacity and quality of care in the district, through support and education to other health professionals and participation in cancer-related committees. 30 There are numerous examples of core competencies for case managers, all of which include similar elements. The National Child Welfare Resource Center for Organizational Improvement has developed a holistic competency model for case managers. The model has five categories of competencies and each category contains a list of competencies with specific behavioural indicators that demonstrate optimal performance. The five categories with their sub-categories follow as an example of the type of competencies expected of case managers Work Management Skills: Performing effectively in the work context. a. Collaboration b. Organizational ability c. Decisiveness and directness d. Information gathering e. Team leadership 2. Conceptual Knowledge/Skills: Using information effectively. a. Problem analysis b. Judgment c. Conceptual thinking 3. Interpersonal Knowledge/Skills: Relating to others effectively. a. Group process b. Interpersonal understanding c. Communication 4. Self-Management Skills: Effective use of self in the job. a. Job commitment b. Self awareness c. Self control d. Self confidence e. Flexibility 5. Technical Knowledge/Skills: Information and skills to perform the job tasks. Page 20 of 46

21 a. Statutory and regulatory bases b. Policy and procedures c. Family centred practice d. Case management e. Cultural sensitivity f. Fiscal responsibility g. External relationships More information about each category of competencies above can be found on the Internet at In the Nova Scotia context, the Workers Compensation Board has core competencies described for their case managers and Cancer Care Nova Scotia is currently in the process of doing so. Page 21 of 46

22 Patient Navigation for HIV/AIDS in Nova Scotia The literature supports the value of case management for people who experience long term, chronic and complex illnesses such as HIV/AIDS. The experience elsewhere is that there are numerous benefits to individuals, families, health professionals and the health system when case management programs are implemented for PHAs. Experience in Nova Scotia has demonstrated the value of the case management approach in the Nova Scotia context. To move forward with an HIV/AIDS patient navigation program in Nova Scotia, it is critical to begin by building on the successes of the past to ensure a solid foundation for the program. The remainder of this section outlines a series of recommendations that if implemented, would lead to the development of a patient navigation program for HIV/AIDS in Nova Scotia. Building Capacity for Chronic Disease Case Management in Nova Scotia Elements of case management are common to all situations, whether the program focuses on cancer, HIV/AIDS or other long term chronic health issues. Providing counselling, education, support and assisting with the coordination of the complex web of medical and social services required by clients are functions that all case managers undertake, regardless of the specifics of the illness. In Nova Scotia, Cancer Care Nova Scotia s Patient Navigation Program has developed a model of case management that is working very well for cancer patients, health professionals and the health system in the areas where the service is provided. Rather than build an entirely new HIV/AIDS patient navigation approach, it makes sense to create a program using the tools developed by the existing patient navigation program (e.g. job descriptions, case management processes, evaluation tools). Page 22 of 46

23 Developing an HIV/AIDS Patient Navigation Program building on the foundation of the Cancer Care Nova Scotia Program will provide an opportunity to test the transferability of the model to programs for clients with other chronic diseases. In addition, connecting the two programs would enable the individuals working in both programs to learn from each other and provide collegial support. Although the disease-specific content of the two programs is different, many of the broader social issues that navigators in both programs face would be similar, such as helping clients strategize around the high costs of medication, how to find affordable housing or how to transition back to the work environment after a long medicalrelated absence. The Cancer Patient Navigation Program has the advantage of being hosted by the province s publicly funded cancer agency, taking advantage of the agency s existing infrastructure and resources to support the operation of the program. Unfortunately, there is no comparable organization for HIV/AIDS, which presents a challenge about what organization should coordinate and operationally run an HIV/AIDS patient navigation program. The most feasible solution may be a partnership involving existing organizations such as ACNS, the Infectious Diseases clinic at the QEII Health Sciences Centre, and perhaps Cancer Care Nova Scotia. Recommendation 1 Develop an HIV/AIDS Patient Navigation Program that is closely aligned with the Cancer Care Nova Scotia Patient Navigation Program both in terms of program design and ongoing program operations. Recommendation 2 Use the opportunity of adapting the Cancer Care Nova Scotia Patient Navigation Program model to evaluate the transferability of the model for case management of other long term chronic illnesses. Page 23 of 46

24 Invest Resources in Planning One of the keys to success for existing case management programs is careful planning of the program, involving all of the stakeholders who will be impacted by the program, including persons with the illness, their families, primary care professionals, health professionals from secondary and tertiary care settings, and health system planners from district health authorities and the provincial government. Developing a common understanding and expectations of the program are important for success. Some of the issues to be considered include: Overall approach of the program: Some programs are based on a doing for approach where the case manager actually acts on behalf of the client, such as making phone calls, setting up appointments, completing forms). Other programs take a more empowerment focus that focuses on educating and supporting the client so that client is able to undertake care-related activities for themselves. It is important that all stakeholders have a clear understanding of the program philosophy from the start. Urban and rural differences: Stakeholders must be clear on how the program will support the needs of PHAs living in urban areas and rural areas. Clients in rural areas often experience difficulty in accessing services locally and find it challenging to acquire transportation to services. Confidentiality is also an issue of greater concern in smaller communities. 31 Given the comparatively low number of persons with HIV/AIDS in Nova Scotia (when compared to cancer for example), it must be expected that there will not be a great number of case managers assigned to work with this population. Therefore, the program will need to come up with creative strategies for supporting clients outside of Halifax, such as regularly scheduled outreach visits around the province or access to a case manager by toll free telephone number or through the provincial Telehealth network. Relationship with District Health Authorities: In Nova Scotia s health system, nine District Health Authorities are responsible for the provision of health care. To be successful in linking clients with services that they require in their own district, the Page 24 of 46

25 HIV/AIDS patient navigation program must have a clearly articulated relationship with the District Health Authorities. Communication with Primary Care Professionals: Much of the care the PHAs receive is through their family physician. In addition to supporting PHAs, the program will be most successful if it finds mechanisms for supporting primary care professionals in their efforts to care for PHAs in their communities. Stakeholders should clarify the relationship that the program will have with primary care professionals. Measures of Success: Before the program is implemented, it is important for stakeholders to identify how the program will be measured, including key indicators to track, mechanisms for data collection and analysis and frequency of reporting. Accountability Relationships: There needs to be a definition of the accountability relationships for the program, including reporting relationships for program staff. Program Standards: To ensure clarity about what services are delivered by the program, development of program standards would be useful. This task is made much less onerous by the existence of several sets of HIV/AIDS case management standards that have been published elsewhere, that could easily be adapted to fit the Nova Scotia 5, 32, 33 context. Recommendation 3 Develop a multi-stakeholder planning team to design an HIV/AIDS Patient Navigation Program. The group should work in close collaboration with the Cancer Care Nova Scotia Patient Navigation Program and build the program based on the experiences of the cancer program. In addition to defining the program parameters, the group will need to identify the most appropriate organizational infrastructure to support the operations of the program. Recommendation 4 Allocate a dedicated staff person to lead and support the program planning and evaluation development work of the multi-stakeholder planning team during the planning phase. Page 25 of 46

26 Ensure that Program Expectations Match Resources In their exploration of the patient navigation role for breast cancer patients, Health Canada noted that almost every navigator with whom they spoke with expressed concern about insufficient resources. Navigators often report that unrealistic caseload expectations are contributing to navigator burnout. 1 The multi-stakeholder steering committee must ensure that expectations of the program are supported by ample resources. The resources required for the HIV/AIDS Patient Navigation Program will depend to a large extent on the specific design of the program. However, for the purposes of estimating the potential financial impact of developing and implementing an HIV/AIDS Patient Navigation Program, a rough budget is suggested below. All wage estimates are based on the average wage rates for Nova Scotia for various occupations provided by the Human Resources and Skills Development Labour Market Information web site ( Salaries are calculated with a 17% benefits load included. The budget below assumes that the program would include two staff people (a social worker/certified counselor and an administrative support person) and provide outreach to clients around the province. Table 1: Potential Developmental Phase Budget Coordinator (to support program development) $23,985 (0.5 FTE Health Policy Researcher/Consultant for 1 year = $41,000*0.5=$20,500+17%) Meeting costs for multi-stakeholder planning committee $18,000 (Based on travel and living costs for 10 meetings; includes stipend for participation of 2 physicians and honoraria for PHA participation, assumes participation from across the province) Evaluation Consultant (to support development of evaluation framework) $5,400 Administration and overhead costs $1,000 Total estimate for development phase (assumes working space and equipment for $48,385 Coordinator is provided in kind by an existing organization) Page 26 of 46

27 Table 2: Potential Program Budget (will change depending on program model selected in development phase Social Worker /Certified Counsellor $57,330 (1.0 FTE Social Worker = $49, %) Administrative Support Person $35,100 (1.0 FTE Executive Assistant = $30, %) Travel to Support Outreach to Clients $20,000 Training and Education $3,000 Support for Stakeholder Program Advisory Committee $9,000 (assumes participation of 2 physicians and 2 PHAs is included; assumes participation from across the province, assumes 5 meetings per year) Program Resource Development and Communication $5,000 Evaluation $15,000 Administration and overhead costs $3000 Total estimate for annual program operation (assumes working space and equipment for staff is provided in kind by an existing organization) $147,430 The above budget is a rough estimate of potential program costs for running an HIV/AIDS Patient Navigation Program with one case manager (social worker/certified counselor). There are operational issues associated with running a program with only one case manager (social worker/certified counselor), such as identifying who will back-fill the role while the individual is on vacation or sick leave, or identifying where the individual will be able to seek support from colleagues when required in difficult cases or at times of high stress. If a program model is designed based on one case manager (social worker/certified counselor), these issues will need to be addressed. Recommendation 5 Ensure that adequate resources are allocated to support both the development and implementation phases of the HIV/AIDS Patient Navigation Program to ensure proper planning precedes program start-up and to ensure that program expectations match allocated resources. Page 27 of 46

28 Adapt and Implement an Evaluation Framework There are two elements of evaluation associated with implementing an HIV/AIDS Patient Navigation Framework. The first is to evaluate the transferability of the Cancer Care Nova Scotia Patient Navigation Model to other types of chronic illness, as previously mentioned. However, equally important is developing and implementing an evaluation framework for the HIV/AIDS Patient Navigation Program to measure the impacts and outcomes of the program. In the interest of reducing duplication and ensuring comparability with Cancer Care Nova Scotia s program, it would be very beneficial to adopt or adapt the evaluation tools designed by Cancer Care Nova Scotia for their program, including their logic model, evaluation matrices with indicators and data collection tools. Recommendation 6 Adapt the evaluation framework from Cancer Care Nova Scotia s Patient Navigation Program for the HIV/AIDS Patient Navigation program. Recommendation 7 Collect baseline data before the program is implemented to provide a benchmark against which changes due to the program may be measured. Page 28 of 46

29 Summary HIV/AIDS is a long term, chronic illness that often requires PHAs to access a wide range of medical and social services to address their complex needs. Many people are confounded by the complexity of the system and have difficulty accessing services. Case management, or patient navigation, has been shown through experience elsewhere and in Nova Scotia with other chronic diseases to have many positive impacts and outcomes for individuals, families, health professionals and the health system. A systematic approach to building on the case management successes of the past in Nova Scotia offers the best option for supporting PHAs in attaining the highest possible quality of life. Developing and implementing a patient navigation program for HIV/AIDS also offers Nova Scotia the opportunity to explore the potential of adapting an existing Nova Scotia model for case management to other chronic illnesses experienced by Nova Scotians. Page 29 of 46

30 Appendices Page 30 of 46

31 Appendix A: Nova Scotia Strategy on HIV/AIDS Recommended Action #4.6 Develop/enhance a protocol for the support and advocacy for PHAs based on the Cancer Care Nova Scotia patient navigation model. The AIDS Coalition of Nova Scotia, in partnership with the Nova Scotia Advisory Commission on AIDS, District Health Authorities, and health and other professional associations, should take the lead to develop/enhance a protocol for the support and advocacy for PHAs, based on the Cancer Care Nova Scotia patient navigation model. The patient support and advocacy protocol would: encourage physicians, social workers and all others in the broad case management system to recognize patient support and advocacy needs; foster, accept, and encourage significant others, supportive individuals, care givers, and advocates to participate in the treatment and care plans of PHAs as desired by the PHAs; establish support networks for families and caregivers of PHAs so they may access ongoing support and assistance; and support advocacy towards facilitating access for PHAs to ensure that they receive the necessary services and support (e.g., patient navigator within the system, an ombudsman outside the system). Page 31 of 46

32 Appendix B: Cumberland County s (New Jersey) Multi-Step Case Management Process Case management is a formal and well-organized process which case managers follow to assess client needs and to help the client access needed services. The steps of the case management process include the following: Intake Prospective clients who request or are referred for case management services are properly screened and evaluated for eligibility through a brief information gathering and decision making process. Information is gathered on the client, family and/ or partner/ significant other and current problem(s) as well as other services the consumer may currently be using. At this stage the focus on gathering information in on the problem or need that the client presents. (Data collection continues into the Needs Assessment phase.) 2. Client Assessment The collection of data regarding the client s medical, mental, social, legal, housing and financial circumstances continues, as well as the evaluation of how these life areas impact the client s ability to function independently. Completion of the Client Assessment will provide the case manager with information which will help in fully understanding the client s current situation, as well as those problems or concerns which may arise in the future. 3. Development of Service Care Plan The translation of the assessment information into specific treatment goals, objectives and outcomes. Specific services and providers are identified who will be responsible for providing services, with an appropriate course of action to address problems. Active participation of the client, Page 32 of 46

33 medical and human service caregivers and significant others is encouraged. At this stage the case manager should think proactively, using identified client needs to anticipate emerging needs as the illness progresses and identifying appropriate resources to meet needs and resolve problems. 4. Implementation of Service Care Plan Obtaining and coordinating services which occur through inter-agency referrals or provision of the services directly by appropriate persons within same agency. Provision of services may also include educating the client and providing support to enable the client to access services. 5. Monitoring of Service Care Plan Provide routine tracking of the referrals made and whether or not the services were successfully delivered to the client s satisfaction. When there has been a problem getting services, identify and start corrective actions as needed. 6. Update/ Revision of Service Care Plan - Review success in carrying out the Service Care Plan and determining whether client needs have significantly changed since the previous Assessment. The plan should be changed if needs have changed. At a minimum, this plan should be updated every six (6) months. 7. Closure Discharging the client from the case management process due to client request, agency termination or client death. Page 33 of 46