Introduction
"We just happened to be in the line of fire”
James comes into the Immunodeficiency Clinic daily. “When he doesn’t, we go looking for him,” says Scott Harrison, the clinic’s director.
The John Ruedy Immunodeficiency Clinic, commonly known as the IDC, doesn’t offer this type of tailored care and support only to James. It offers it to all its patients. While most patients don’t need such intense interaction with clinic staff, for those who do, peer navigators, a mental health team, a complement of primary care providers, nurses, social workers and a dietitian are available to provide comprehensive services to meet the needs of patients whenever they drop in.
The IDC, founded in the 1980s, cared for people living with HIV and AIDS when few treatments were available. “St. Paul’s just happened to be in the line of fire in the early years of the epidemic,” says Mary Petty, a social worker who has worked at the IDC since 2000. At that time, there was very little that providers could do for patients, most of whom were gay men living with and dying of AIDS.
A lot has changed in the landscape of HIV in Vancouver since then: effective treatments became available in the 1990s and British Columbia started to offer them for free to anyone who met treatment guidelines. At the same time, an increasing number of people living in the Downtown Eastside were being diagnosed with HIV/AIDS.
In response to these two developments and the complex needs of people like James, Providence Health Care, the organization that administers the IDC, transformed this clinic from collection of HIV primary care doctors into an interdisciplinary, comprehensive HIV primary care clinic, with a specific mandate to meet the needs of people with the most entrenched and complex barriers to care. Today, patients “have access to a community of care, which takes into account a person’s whole life,” says Harrison.
With funds from the Seek and Treat for Optimal Prevention of HIV/AIDS (STOP) Project, received in 2010, the IDC strengthened its existing support services. In response to patient feedback, the clinic expanded its hours, a critical change that has enabled the clinic to better accommodate the schedules of patients, and it has added nurses and social workers to enhance its specialist services in addictions and mental health. The IDC also hired a dietitian, who provides an important service to patients who need good nutrition to optimize their treatment outcomes but who may not have the skills or resources to determine and maintain an appropriate diet.
The IDC also partnered with Positive Living BC to offer peer navigation services. The navigators provide a peer-based resource that further reduces barriers that patients might face in accessing care at the IDC and elsewhere. According to Petty, having a person living with HIV on staff has also been beneficial for people who have just tested positive and “makes such a difference for people” as they engage in care.
For people like James, the IDC’s comprehensive, patient-centred, low-barrier care has been key to his retention in care and adherence to his medication. “The 20 minutes that he spends with us give him the security he needs to face his day,” says Harrison.
What is the Program?
The John Ruedy1 Immunodeficiency Clinic (IDC) at St. Paul’s Hospital is a comprehensive primary care clinic for people living with HIV/AIDS in British Columbia. With a focus on addressing the needs of the whole person and reducing the impact of poverty, addictions, mental health, food insecurity and episodic homelessness, the clinic offers integrated and comprehensive services to patients.
Its services include individualized psychosocial support and case management, mental health and addictions counselling and treatment, hepatitis C care and treatment, and HIV primary care. The clinic also offers a community kitchen. Patients are encouraged to treat the clinic as their space and are free to drop in whenever they want to.
The clinic’s patients have access to 12 family physicians who are trained to provide primary care to people living with HIV, registered nurses, social workers, an addictions counsellor, a psychologist, pharmacists, a dietitian and peer navigators. The clinic is designed to be low barrier so that the complex needs of patients can be met. Patients can often see multiple care and support providers in one visit on a drop-in basis or by appointment any time between 8 am and 8 pm Monday through Thursday and between 8 am and 4 pm on Friday. Patients needing care or support after hours can reach a physician by phone for guidance on health issues.
While the majority of the IDC’s patients receive both their primary care and their HIV care at the IDC, a small number of patients continue to see a family doctor elsewhere and only access the IDC for HIV care.
- The IDC is named in honour of John Ruedy, MD, who helped transform St. Paul’s Hospital into a comprehensive clinical-care centre for patients with HIV/AIDS.
Why Was the Program Developed?
The IDC is located at St. Paul’s Hospital, in the west end of Vancouver, close to the gay village. In the 1980s, the hospital welcomed people with AIDS and AIDS-defining illnesses to receive care. The IDC grew out of the hospital’s commitment to serve people living with and affected by HIV.
In the 1990s and early 2000s, when the impact of HIV in the Downtown Eastside became apparent, the IDC responded to the needs of this new population. In 2003, the clinic was transformed into a comprehensive interdisciplinary clinic committed to providing low-barrier access to complete HIV care for the most vulnerable to address gaps in treatment.
In 2010, the IDC received money from the STOP Project, with which it further lowered barriers to care. To accommodate patients’ schedules, it expanded its clinic hours to cover four evenings a week. It added specialized nursing and social worker resources in mental health and addictions to better serve patients living with these challenges, and peer navigators to facilitated engagement in care. It also added a dietitian, who helps patients plan healthier meals within the constraints of their skills and their resources. The IDC also introduced point-of-care testing for HIV-negative people seeking an HIV test.
How Does the Program Work?
Accessing the IDC
Referrals
Referrals can be made by general practitioners and clinics with HIV-positive patients, specialists, public health nurses, AIDS service organizations (ASOs) and other community-based organizations. The STOP Outreach Team, an interdisciplinary clinical team responsible for improving engagement and linkage for people with the most complex barriers to care, also makes referrals to the IDC. Additional referrals come from services within St. Paul’s Hospital, including the HIV acute care unit and the IDC’s point-of-care testing service. However, a referral from a healthcare provider is not required to access IDC’s services, and many patients self-refer.
Intake
A social worker performs the intake assessments in person or over the phone. The goals of the intake process are to:
- facilitate low-threshold access to care by assessing the patient’s needs and barriers and establishing a rapport
- ensure rapid entry into care for patients who have recently tested positive for HIV and for those with emergency antiretroviral needs (e.g., patients whose supply of antiretrovirals has run out)
- begin ongoing processes of education and self-management by providing basic information about how the clinic works and what services are available
- assess the suitability of the IDC to the patient’s needs and link people who would be better served elsewhere or could access care closer to home to alternate care providers, ensuring that they have an appointment before disengaging with them
The intake worker also does a brief psychosocial assessment, paying attention to issues that could make it difficult for the patient to access care, including mental health issues, substance misuse, inadequate or inappropriate housing, immigration issues and proximity to Vancouver. Through this assessment, the social worker assesses the urgency of the referral. If during this assessment the social worker feels that the IDC is not the right place for the patient to receive care, they provide support and linkage to more appropriate services in the community. IDC’s strong relationships with primary care providers in the community, many of whom were trained at the IDC, allow staff to find the right provider for patients who would be better served in a community setting.
When a person presents at the clinic with pressing medical needs, a nurse will be called in to do the follow-up appointment, called the nursing first contact visit, immediately. When a person has been assessed as stable, efforts are made to schedule follow-up appointments within a week.
Nursing first contact visit
Once an intake assessment has been made and the patient is enrolled in the IDC, the social worker schedules a nursing first contact visit. This 60-minute appointment takes place before the patient’s first appointment with an IDC doctor to ensure that results of blood work that the nurse performs (CD4 count and viral load) or other tests are available. During this appointment, all patients receive an orientation to the clinic’s policies, hours and services.
The nurse also builds on the information the social worker collected during intake and makes referrals as needed for mental health and addictions counselling and for counselling on how to access resources such as housing. Most importantly, the nurse provides HIV education, explains viral load and CD4 counts are, and discusses treatment initiation, HIV transmission, HIV disclosure and safer sex. Nurses encourage patients to engage actively in their care by bringing any questions or concerns they have to the clinic. The nurse also introduces the patient to the peer navigators housed at the IDC, who provide support services to patients.
Care is taken to match patients with doctors on the basis of the patient’s specific needs and preferences. Patients are usually matched with a doctor and attend their first appointment with their doctor within a week of the nursing first contact visit. If medical care is required during the first contact visit (because medication must be initiated or renewed or other urgent medical needs must be addressed), the patient will see one of the doctors covering drop-ins.
Clinical services
Nursing services
In addition to offering HIV primary care through the clinic’s physicians, IDC provides nursing services to patients that do not require them to make an appointment with a doctor. The availability of nursing services has enabled IDC to become more accessible by expanding the number and types of appointments and drop-in slots available to patients. It has also improved the quality of care offered and reduced physician workload. It allows both physicians and nurses to work to the full scope of their practice.
Nurses offer education on sexually transmitted infections; blood work; anal Pap smears, cervical Pap smears and female breast examinations; immunizations and tuberculosis skin tests; wart treatment; wound care; and individualized and non-judgmental HIV education and support services.
Hepatitis C services
Many of the IDC’s patients live with HIV and hepatitis C virus co-infection. The IDC has two hepatitis C specialist nurses who support patients going through treatment. Only a small percentage of patients with co-infection are currently in the hepatitis C treatment program because some patients are not yet ready to undertake treatment or treatment is not clinically indicated for them. The IDC also provides hepatitis C services to people with co-infections who are not IDC patients.
The IDC’s hepatitis C services include assessing treatment readiness, providing treatment and monitoring blood work and treatment side effects. Patients needing added support while on treatment have access to a social worker and can be referred to community organizations that run support groups for people in treatment.
Point-of-care testing
Since 2010, the IDC has offered a point-of-care testing service for anyone in Vancouver wanting to get tested for HIV. This service was introduced as part of the STOP Project’s commitment to expanding HIV testing options. Although clinic administrators thought the clients for this service would primarily be HIV-negative partners in serodiscordant couples, the service has been accessed by a variety of people. Gay men and other men who have sex with men are the predominant group accessing this service.
To promote the roll-out of this service, the IDC advertised in the hospital, in the community and through online forums. On average, nurses provide between 50 and 60 point-of-care tests a month at the IDC. As of November 2012, 2% of the tests conducted through this service were positive.
Despite the implementation of streamlined pre- and post-test counselling protocols in British Columbia, the IDC continues to offer in-depth counselling and education services as part of its point-of-care testing. Clinic staff feel that testing offers a key opportunity to provide tailored risk-reduction counselling, both to individuals and to couples.
When someone receives a preliminary positive test result, the IDC’s community of care provides the support the patient needs. Confirmatory blood work and other baseline blood work is collected immediately. The patient is offered the services of a peer navigator, and if the person decides to remain in care at the IDC, an intake assessment and a nursing first contact visit are conducted as soon as possible. The IDC’s goal is to ensure that everyone is linked to care, so if a person does not want to receive care at the IDC, staff ensure that follow-up care outside the clinic is arranged.
Non-occupational post-exposure prophylaxis (nPEP)
Since 2012, the IDC has offered assessments to determine whether post-exposure prophylaxis is needed for high-risk non-occupational exposures to HIV and has provided follow-up support for those prescribed such prophylaxis in the community. Referrals for this service come from the emergency department at St. Pauls’ Hospital, from the BC Centre for Disease Control and from community clinics. This service is currently being offered as a pilot (2012-2013) in conjunction with the BC Centre for Excellence in HIV/AIDS.
Social work at the IDC
Social workers provide comprehensive wraparound support services and coordinate intensive case management for the IDC’s patients. With a referral from their healthcare provider, people living with HIV who receive care in the community can also access the IDC’s mental health team and intensive care management service.
Psychosocial support
In addition to coordinating and assessing new intakes, social workers provide addictions counselling and referrals to detox and treatment, adjustment and relationship counselling, crisis intervention, and resource counselling, including support for housing and social assistance applications.
Support groups
Support groups have been a service of the IDC since the 1980s. In the early years the groups focused on death and bereavement, but as effective treatments became available they shifted focus.
Currently, a single support group operates out of the IDC. The focus of the group is on aging and surviving long-term with HIV, and the group is open to anyone in the community living with HIV. The group meets weekly at St. Paul’s and is facilitated by an HIV-positive peer and a social worker.
Intensive case management
The IDC’s intensive case management service is one of the clinic’s most critical tools to keep IDC patients with complex needs engaged in care. This service provides highly individualized services to those who experience the most entrenched barriers to care as a way to improve retention and adherence. In addition to being available to IDC patients, the service is available to people living with HIV who receive care and treatment in the community.
As of November 2012, 111 patients have been identified as needing intensive case management. Members of the clinic’s team refer patients for case management whom they think would benefit from having a more intensive level of support. Referrals are done through a referral form. The case management team includes a physician, the clinical nurse leader, a case management nurse, the addictions nurse, the mental health nurse, the addictions counsellor and social workers.
Through the referral process, the team determines why the patient needs to be case managed and identifies their specific barriers to engagement. The most frequent reasons for referral to case management are poor engagement in care, complex medical needs, complex psychosocial needs and frequent emergency department visits.
Each case management plan is individualized. Interventions include offering appointment reminders and accompaniment; providing resource counselling (concerning housing, food security programs and social assistance); coordinating care; and coordinating medication dispensing in the community. For some of these patients, this individualized care includes an outreach component. While the social workers have some flexibility to do this type of work, currently the IDC relies on the STOP Outreach Team to provide outreach services.
Mental health team
The IDC offers the services of a mental health team as part of its comprehensive HIV services. The team includes a mental health nurse who assesses new referrals and provides crisis intervention and counselling; a part-time physician who provides initial assessments and medication initiation; a team of part-time psychiatrists who provide assessments, diagnostic clarification, medication management and supportive therapy; and a psychologist who provides psychotherapy and treatment for depression and anxiety and counselling for patients receiving hepatitis C treatment. The team also includes an addictions counsellor who provides harm reduction and substance use counselling, resource support and referrals for treatment and a team of social workers who provide counselling on diagnosis adjustment, grief, relationships, stigma and trauma and who provide intensive case management and support.
Referrals are accepted from the IDC and from community healthcare providers. As part of its commitment to improving HIV care throughout Vancouver, the IDC accepts referrals for mental health care for HIV-positive patients who do not receive primary care at the IDC. Each new referral is discussed at a weekly team meeting and a decision is made about who will lead the initial management of the patient. Once a referral has been accepted, the patient is contacted directly for an appointment.
Peer navigator services
The IDC has four part-time peer navigators. These are people living with HIV who offer support to those seeking services at the clinic. These navigators are a part of the Peer Navigator Program, which is a partnership between the IDC and Positive Living BC. Peer navigators are available daily and most interactions happen on a drop-in basis. As of November 2012, the program was staffed by a woman and three gay men. Effort has been made to engage navigators with whom IDC patients will identify.
The peer navigators’ office is located in the middle of the clinic, close to the waiting room and the reception area. It’s an open office filled with resources, and patients are encouraged to drop in. Navigators will also go out into the waiting area and make themselves available when drop-in volume is light. IDC staff often introduce new patients to the navigators. When a patient receives a positive HIV test result at the clinic, staff ask them if they are interested in meeting someone who is HIV-positive as part of post-test counselling.
One of the navigators’ primary roles at the IDC is to help patients understand their diagnosis and what it means to live with HIV. This includes helping people living with HIV and struggling with their diagnosis to come to terms with it. Although clinicians explain the clinical meaning of a positive diagnosis to patients, it is often in talking to the navigators after their diagnosis that patients begin to understand what it means to live with HIV, what it means to be on treatment and how to be engaged with their own care.
The peer navigators also play a significant part in ensuring that patients remain engaged in care. Navigators facilitate the parts of care that patients find most challenging. For those who find waiting for appointments overwhelming, the navigators offer their office as a space to chat and wait. For those who are challenged by interactions with medical authorities, navigators offer to accompany them to their appointments or make themselves available for debrief once the appointment is finished. Despite the IDC’s low-barrier nature, some patients relate better to the navigators than to the clinicians. In this regard, the presence of the navigators makes the IDC seem less institutional and less intimidating.
IDC as part of the Vancouver community of care
The IDC is an integral part of the wider Vancouver HIV community. It is active on the HIV clinical practice council and is a member of the Pacific AIDS Network. Staff are active at AIDS community rounds and AIDS care rounds (hosted by St. Paul’s), both of which are attended by clinicians and community groups.
Preceptorships
Perhaps the most crucial way in which the IDC contributes to Vancouver’s HIV community of practice is through the training opportunities it offers to family physicians and nurse practitioners seeking additional training in HIV primary care. The objective of this program, which is offered in conjunction with the BC Centre for Excellence in HIV/AIDS, is to enhance the skills of primary care providers to provide care and treatment for people living with HIV/AIDS, by improving knowledge of diagnosis and treatment management, of antiretroviral therapies and of medical complications and treatment failures. By enhancing the ability of family physicians to provide HIV primary care in the community settings, the IDC has allowed patients to receive integrated care, from diagnosis to treatment management, through their primary care providers.
Next steps
Each of the STOP-funded initiatives at the IDC (the additional nurses and social worker, the peer navigators, the dietitian, the extended hours of operation and point-of-care testing) has been embedded in the clinic’s services and will continue as part of the clinic’s comprehensive care after the STOP Project is completed in March 2013.
Required Resources
Human resources
The IDC offers the most comprehensive primary care in British Columbia for people living with HIV. Because the clinic is part of St. Paul’s Hospital, it has access to the hospital’s diagnostic and treatment resources. Most of the specialists with whom IDC patients interact also have experience and knowledge about how to care for people living with HIV.
- Clinical nurse lead: 1.0 full-time equivalent (FTE). Coordinates staffing, schedules and day-to-day operations. Available Monday to Friday.
- Dietitian: 1.0 FTE. Offers tailored nutrition support to the IDC’s patients, including links to meal supplement programs and education on food preparation and eating well.
- General practitioners: 2.8 FTE, covered by 12 physicians. Specialize in caring for people living with HIV. The clinic is staffed by two general practitioners each day who cover drop ins. Available Monday through Friday and on call by telephone outside clinic hours.
- Peer navigators: 4.0 FTE. Offer auxiliary support, including peer counselling and education and accompaniment services.
- Pharmacist: 0.7 FTE. Offers counselling on side effects, drug interactions and adherence. Supports the primary care team and offers advice on drug interactions, regimens and adherence. Available Monday to Friday.
- Reception staff: 6.0 FTE. Coordinate the administrative needs of the clinic. Available Monday to Friday.
- Registered nurses: 6.0 FTE, covered by 11 nurses. Nursing staff includes nurses who specialize in mental health, addictions and hepatitis C. Nurses triage patients coming in for scheduled appointments and drop-in visits, conduct staff nursing appointments, see patients for point-of-care testing, and do assessment and follow up for non-occupational post-exposure prophylaxis. Available Monday through Friday.
- Social workers: 4.0 FTE. Social work staff includes an addictions specialist and a social worker who focuses primarily on research. Available Monday through Friday.
Challenges
- Waiting. Despite the fact that the IDC offers drop-in services, patients must still wait to see their service providers. This is especially true of those who access IDC’s drop-in services as they have to wait to be seen between scheduled appointments.
- Mental health team. The mental health team lacks capacity to help everyone who needs care because appointments with psychiatrists are limited and the team does not offer outreach support. It is also challenged by specialized care needs, including needs related to sexual abuse and post-traumatic stress disorder. In both instances, the team addresses the patient’s needs as best it can and then, if it is needed, coordinates more appropriate care elsewhere.
Evaluation
The IDC has a culture of continuous quality improvement, and the clinic’s services and programs are frequently evaluated to improve the patient experience.
Evaluation at the clinic can be divided into two broad categories:
- continuous quality improvement
- STOP Project evaluation
Continuous quality improvement
The IDC’s Quality Improvement Group meets monthly to analyze quality improvement data captured by the clinic. The group uses the data to improve or introduce new services, tailored to patient needs. The Quality Improvement Group also assists specific teams or programs within the clinic to establish appropriate indicators to evaluate their own services.
Patient satisfaction is assessed through a patient advisory group. To make the group as accessible and low barrier as possible, patients are invited to provide feedback on the clinic’s services and programs and to share their experiences bimonthly. Food is offered to anyone who stops in.
STOP Project evaluation
With the introduction of the STOP Project, the IDC analyzed data it collected to measure its success according to several indicators, including the number of clients on antiretroviral therapy who were clinically indicated for treatment, the number of people who had recent CD4 and viral load counts and the number of patients engaged in care.
The analysis revealed that a number of the clinic’s clients had been lost to care and that the clinic needed a process to re-engage clients in care. As a result of this analysis, the IDC now takes a proactive approach to re-engaging clients and makes telephone calls, sends letters and involves the case management team when necessary.
Peer navigators
The Peer Navigators Program has been evaluated both quantitatively and qualitatively to determine its effectiveness at supporting people to engage in care. By tracking the frequency of sessions between navigators and clients and by having clients rate their experience with navigators and their own knowledge level regarding HIV, the IDC determined that most people’s self-confidence and their knowledge of HIV and how to manage it increased as a result of their interactions with peers.
The IDC also evaluated the partnership among the STOP Outreach Team, the IDC, the HIV acute care unit at St. Paul’s and the peer navigators. This evaluation determined that clinical staff appreciated having peers on their teams because they provided support and education on the basis of their experiences of living with HIV.
Point-of-care testing
The IDC collects quantitative data on the point-of care testing initiative, including the number of tests performed and the number of positive results. Staff also collect data on where people heard about the service and why they chose the IDC for their rapid test. Results to date indicate that 50 percent of people getting tested found out about the service online and that many patients prefer the hospital setting for testing because it offers more anonymity than a sexual health clinic or their family doctor’s office.
Mental health team
As of November 2012, the mental health team is only tracking quantitative data on the number of people referred and the number of people being transitioned to other mental health services. These data are being collected to determine if the team needs more capacity and whether it should be partnering with other services and organizations to offer mental health support to patients.
Intensive case management
As of November 2012, the IDC is refining its case management service and creating new evaluation criteria to better measure patient outcomes.
Lessons Learned
- Interdisciplinary approach. The access to interdisciplinary resources, both within the clinic and at St. Paul’s Hospital, makes the IDC a convenient place for its patients to receive both primary and HIV care. Most specialist appointments can be scheduled on the same day.
- Low-barrier access. The mixture of drop-in and appointment-based visits has allowed the IDC to reduce barriers to access for many. A non-punitive approach to missed appointments has also reduced barriers for those who are challenged by appointment times. Patient reminders the day before an appointment have reduced no-shows by 50%.
- Improved communication. Communication across disciplines in the clinic has been a challenge. The establishment of daily patient rounds and the development of a monthly newsletter have increased communication and collaboration among different staff teams.
- Lunch ’n’ learns. To address limited staff knowledge of community resources that complement the IDC’s work, the clinic now hosts lunch ’n’ learns that bring community organizations into the IDC to present on their care and support services.
- Nursing services. Nursing services have made the clinic much more efficient and reduced wait times. They have allowed both doctors and nurses to work to the full scope of their professions. Increasing the availability of care options has been important in engaging a population that would typically delay care.
- Point-of-care testing and counselling. As of November 2012, 1288 point-of-care tests have been performed at the IDC and 26 new positive results have been confirmed. This is a 2% yield, pointing to the acceptability and effectiveness of the service. As part of this service, the IDC continues to offer in-depth pre- and post-test counselling. The nurses who perform the counselling and testing have found that this is a beneficial time to discuss general HIV education and specific risk reduction strategies with patients.
- Case management. Given the complex barriers some people face when trying to access care, much of the work of this team involves identifying the incentive that will keep people in care. This individualized approach has proven effective for engagement of patients with complex barriers to care.
Program Materials
- Intake assessment process
- First contact assessment form
- Referral form to mental health team
- Point-of-care testing advertisement
Contact Information
For more information, please contact:
Scott Harrison, Director
Immunodeficiency Clinic (IDC)
B552 - St. Paul’s Hospital
Vancouver, BC
604-806-8693
sharrison@providencehealth.bc.ca
What is the STOP HIV AIDS Project?
Seek and Treat for Optimal Prevention of HIV/AIDS (STOP) was a $48 million, four-year (2010-2013) pilot project funded by the government of British Columbia. This project aimed to increase the quality of life of people living with HIV and reduce the number of new HIV infections by taking a proactive public health approach to finding people living with HIV, linking them to HIV care and treatment programs and supporting them to stay in care. STOP aimed to improve the experience of people living with HIV or AIDS in every health and social service interaction and significantly improve linkage and engagement across the full continuum of services in HIV prevention, testing and diagnosis, treatment, and care and support.
STOP was rolled out in Vancouver and Prince George. It was made up of numerous interconnected and discrete clinic-based, hospital-based, community-based and policy-focused programs implemented through the collaboration of a significant number of stakeholders. In Vancouver, Vancouver Coastal Health and Providence Health Care partnered to form the Vancouver Project. Through this partnership, these two organizations shared governance, funding and reporting for most of the initiatives that took place in Vancouver between 2011 and 2013.
With funding from STOP, the IDC expanded its clinic hours to include evenings from Monday through Thursday; added specialized nursing, dietitian and social work staff; introduced point-of-care testing; and added peer navigation services in partnership with Positive Living BC.