The following are definitions used in the Hepatitis C Teams’ Activities tracking tools.
1. Demographic Information
Service Users/Clients
- For the purposes of this activity tracking tool, Service Users and Clients are used interchangeably to identify people engaged with the HCV team. Patients are people who are accessing medical care from the HCV team.
- Report on service users who accessed services within the reporting period. A service user is someone who is registered with the HCV team (they do not have to be ‘rostered’ to your organization, just ‘registered’ with the team). This could be an outreach client who is engaged with the team, a patient engaged in treatment, etc. A brief or significant encounter with an individual that is not subsequently registered as a result of that encounter can be captured in question 4.
- Please note that only service users who are captured in questions 1a – 1c (demographic questions) can be captured in question 1d (Service sessions provided).
Population Groups
- Patients are people who are accessing medical care from the HCV team.
- Please indicate whether the individual is a patient living with HCV, is a patient receiving post-cure care or is a person at risk of acquiring HCV.
- Patients living with HCV are patients who tested positive for either HCV antibody (and require RNA testing to confirm their diagnosis) and/or RNA, identify with one or more of the priority populations, and fall into one of the following four treatment categories: currently on treatment, treatment has failed, has not initiated treatment, or treatment is not currently an option.
- Patients receiving post-cure care are patients who identify with one or more of the priority populations, have been cured of HCV, and continue to engage with the HCV team for ongoing clinical monitoring/support.
- A person is considered at risk of acquiring HCV if they are HCV antibody-negative (or HCV antibody-positive but RNA-negative), identify with one or more of the priority populations and are engaging in activities that can lead to (re)acquisition of HCV.
New/Existing
- A new service user is someone who is new to the program within the reporting period. They may have received multiple services throughout the six months; however, if they are new to the program within the six months, they should be counted as new for the current report.
- If a service user has been registered prior to the current report and continues to access services, they should be counted as existing. All existing service users will need to have their demographic information (questions 1a-d) entered into OCHART once during each reporting period. It is important to ensure service users are not double counted.
Sex/Gender
- Trans men are persons assigned “female” at birth who identify as men.
- Trans women are persons assigned “male” at birth who identify as women.
- Not listed is defined as an individual who identifies with a gender that is not captured in the options provided. This should not capture those individuals who were not asked what gender they identify with or where gender is unknown. Please ensure that the gender for each client remains consistent throughout all OCHART questions.
Reporting Period
The fiscal year is broken up into two reporting periods:
- H1 - April 1st to September 30th, which is due on October 30th; and
- H2 - October 1st to March 31st, which is due on April 30th.
Age Ranges
Age ranges have been provided as people’s exact ages are not always known, depending on the type and amount of engagement the service user has with the program. It is expected that teams should provide accurate ages as much as possible, but if the age range is not known, there is an ‘unknown’ box that can be chosen. No more than 10% of your service users should have an unknown age range.
Ethnicity
Ethnic categories align with current standardized epidemiological metrics. Only the ethnicity that the service user identifies with as their primary ethnicity should be indicated.
- Not listed means the service user identifies with an ethnicity that is not listed in the provided ethnic categories.
- Unknown is for individuals who do not know their ethnic background. No more than 10% of your service users should have an unknown ethnicity.
2. Service Sessions
Question 1d – Service Sessions has been broken down into three sections (1d 1-3): 1) service sessions provided to patients living with HCV, 2) patients receiving post-cure care and 3) people at risk of acquiring HCV. There is a distinct list of service sessions to choose from for each service user/client group.
- Adherence Counselling - Specific counselling as it relates to the importance of adherence to HCV treatment and/or HIV treatment (in situations of co-infection).
- Application Completion - Includes the actual completion/submission of forms such as Trillium, Exceptional Access Program, Ontario Health Card, Ontario Disability Support Program, Ontario Works, etc.
- Appointment Accompaniment - Programs may offer to accompany clients to appointments to increase their comfort level with attending appointments and also increase the likelihood that the clients will follow through with the appointments.
- Case management/coordination - Includes case conferences (with or without the client present); searching for information and/or advocating for a client; contacting other service providers on behalf of a client; discussing a case with other professionals (internal and external); and any other non-clinical activity(ies) to plan or facilitate client care, as per your organization’s practice.
- Clinical Counselling - Counselling that pertains to HCV treatment, mental health, addictions and/or general overall health provided by a regulated health care provider (e.g., registered nurse, nurse practitioner, registered social worker, physician).
- General Support - A general support session does not involve treatment for a mental health issue (i.e., thought, cognition, mood, emotional regulation, perception or memory that may seriously impair the individual’s judgment, insight, behaviour, communication or social functioning). Examples include financial/money management counselling or emotional support. Usually, non-clinical counselling is practical and short-term.
- Intake and Assessment - Gathering demographic/medical/social/other information about the service user to help identify their needs. Intake and assessment procedures are specific to each HCV team and may depend on program offerings and requirements.
- Ongoing Clinical Monitoring - Clinical monitoring for individuals who have completed HCV treatment that will be carried out over time, at varying intervals. Continued monitoring to assess liver health, assess for hepatocellular carcinoma, management of extrahepatic manifestations, etc. How long a patient undergoes post-cure clinical monitoring through HCV teams depends on organization policy and practice, and the availability of qualified primary care providers locally.
- Practical Assistance - Includes financial assistance, food vouchers, food access, bus tickets, help with transportation (i.e., driving client), over-the-counter samples. This does not include the form/application process, as this activity is covered under ‘Application Completion’. IMPORTANT: In adherence with the ministry’s Financial Guidelines, the delivery of practical assistance is funded using non-ministry funding (e.g., donations, fundraised dollars, other funders). For questions, contact the ministry.
- Vaccinations - Hepatitis A, hepatitis B and annual influenza vaccines are recommended for HCV-positive individuals. All vaccines are available free of charge through the local public health unit. Only include vaccinations provided by your team as service sessions in OCHART. If your team refers patients to the local public health unit or another provider, please do not include as a service session.
- Wellness Check - This is a quick check-in over the telephone or an in-person visit (by a peer or other team member) to the client’s home/location to reduce isolation and identify if further support sessions and/or care are needed.
3. Testing
Agency not Funded to Provide Onsite/Outreach Testing
Unless otherwise agreed to with the ministry, all HCV teams are funded to provide onsite and outreach testing. There are additional organizations funded to provide non-clinical programs and services that report in OCHART. Testing-related questions in OCHART pertain only to HCV teams.
- Onsite Testing - Onsite testing refers to testing that is conducted by the HCV within your agency’s central or satellite locations, including co-located/onsite programs/services, such as Consumption and Treatment Services.
- Outreach Testing - For the purposes of this report, outreach testing refers to testing that is conducted at partner agencies, during street outreach, and community events. Testing done at co-located/onsite programs and services, such as Consumption and Treatment Services, do not qualify as outreach testing.
- Total Number of HCV Antibody Tests - This testing pertains to the screening test for HCV. Include all HCV antibody tests that are conducted by the HCV team, regardless of modality (i.e., venepuncture, point-of-care, or dried blood spot). Do not include HCV antibody tests done at community labs.
- Total Number of HCV RNA Tests - This testing pertains to the diagnostic test for HCV. Only include HCV RNA tests for diagnosis (to confirm active infection for positive HCV antibody tests) that are conducted by the HCV team. Do not include HCV RNA tests done at community labs.
- Total Number of HBV (Antibody/Antigen) Tests - This testing pertains to the diagnostic test for HBV conducted by the HCV teams. It is all-encompassing; the panel of possible tests (e.g., anti-HBc, anti-HBs, HBsAg, IgG, IgM, HBV DNA) should be counted as one test per person tested per testing occurrence. Each individual marker should not be counted individually (regardless of the number of tests the panel includes). Do not include HBV tests done at community labs.
- Total Number of HIV (Antibody) Tests - This includes all HIV tests, regardless of modality (i.e., venepuncture or point-of-care), that are conducted by the HCV teams. Teams participating in the Ministry of Health Point-of-Care HIV Testing Program, must also complete the reporting requirements of this program. For additional information about the HIV Point-of-Care HIV Testing Program, go to https://hivtestingontario.ca/ or contact poct@ontario.ca.
Outreach Locations
For the purposes of this report, outreach is defined as work provided in locations where community members congregate or socialize. Outreach testing refers to testing that is conducted at partner agencies, during street outreach, and community events. Co-located/onsite programs and services, such as Onsite Consumption and Treatment Services, do not qualify as outreach locations.
- Addiction Program - Includes residential addiction programs, day addiction treatment programs and/or withdrawal management centres. This option does not include methadone maintenance programs, as this is a separate option (see below).
- AIDS Service Organizations (ASOs) - ASOs are community-based organizations that provide supports and other services for people living with HIV/AIDS and at risk of acquiring HIV. While their primary function is to provide needed services to individuals with HIV, they also provide support services for service users’ families and friends as well as conduct prevention activities. These services may include family or individual counselling as well as HIV testing and referral resources. If your agency is an ASO, you cannot choose this as an outreach location. This testing should be reported as onsite testing.
- Clinic/Health Centre - Includes any community partners that are clinics (excluding methadone clinics and your agency’s satellite clinics)/health centres that your agency is not affiliated with. Please only select this option if the outreach setting is another health service provider that is a clinic/health centre. If the clinic/health centre is one of your organization’s satellite clinics, please capture this testing as ‘onsite’ testing.
- Correctional Facility - For the purposes of this report, “in-reach” refers to providing outreach-type services within correctional facilities, such as (but not limited to) offering support, testing, information and individual advocacy.
- Drop-in Centre - Some examples of drop-in centres/programs may include community programs, church programs and John Howard Society breakfasts.
- Food Bank/Soup Kitchen - Food programs, food banks, soup kitchens are all examples of this type of outreach location.
- Hotel/Motel - For the purpose of this report, hotel/motel is defined as where service users live or are staying for an extended period of time (long enough to be able to obtain the results of blood work) or where work is being conducted (e.g., people involved in sex work).
- Mobile Service - Testing conducted on the agency’s mobile outreach van or a partner agency’s mobile unit.
- Methadone Maintenance Clinics - Methadone clinics may be privately funded (e.g., Ontario Addiction Treatment Centres), through hospital-based/outpatient clinics and/or community-based programs (e.g., Rapid Access Addiction Treatment [RAAM] clinics). Methadone maintenance clinics are also known as opioid substitution (or agonist) therapy clinics/programs.
- Mental Health Service - Organizations such as the Canadian Mental Health Association (CMHA) and community mental health programs (e.g., residential, out-patient and drop-in programs) are all examples of mental health services.
- Pharmacy - This outreach location specifically speaks to community pharmacies. In-hospital pharmacies may not be conducive to offering outreach activities.
- Shelters - Homeless shelters may include emergency, day, youth and family shelters which may be regionally or privately operated or operated by charities such as the Salvation Army.
- Street Outreach - This type of ‘on-foot’ outreach testing differs from ‘mobile services’ as it brings team members into more remote locations such as parks and alleys as well as walking the streets to meet and engage with at-risk clients.
- Social Gatherings - Examples of ‘social gatherings’ include community picnics, parties, World Hepatitis Day events, etc.
4. Treatment
Agency Not Funded to Provide Treatment to Clients
All HCV teams are funded to provide HCV treatment. There are additional organizations funded to provide non-clinical programs and services that report in OCHART. Treatment-related questions in OCHART pertain only to HCV teams.
Priority Populations - The teams were set up utilizing a multidisciplinary approach to provide access to low-barrier, wraparound care for people who face barriers to accessing traditional forms of healthcare including:
- People who use drugs
- People involved with the correctional system
- People who are homeless or under-housed
- Indigenous Peoples
Note: Indigenous communities are diverse with distinct and unique histories, languages and cultural practices. The use of the term “Indigenous Peoples” is intended to be inclusive of First Nations, Inuit and Métis peoples.
- Street-involved Youth
Note: Street-involved youth are defined as youth aged 15 to 24 who have no permanent home and spend significant time on the street.
- Patients who Were Identified as Spontaneously Cleared - ‘Spontaneously cleared’ refers to patients who have cleared the virus without treatment. These are patients who, as part of their treatment workup, were found to be both HCV- and RNA antibody-positive but were found to be RNA-negative at least six months later.
- Patients who Achieved a Sustained Virologic Response (SVR) - A patient who achieves SVR after completing treatment is considered cured of their HCV. SVR blood work is conducted three months (12 weeks) after treatment completion.
- Patients who Did Not Achieve SVR - A result that indicates that the course of the treatment failed, and the patient continues to have chronic HCV.
- Patients who Have Not Completed SVR Blood Work/Results Pending - Patients who have yet to complete their SVR blood work because it has not yet been 12 weeks since treatment completion, loss to follow-up, or the SVR blood work has been completed and the results are pending at the time of report submission.
- Patients who Completed the Prescribed Course of Treatment - Patients who have completed the prescribed course of treatment irrespective of SVR testing.
Treatment Exclusions
A patient is considered excluded from treatment when there are factors that prevent them from initiating treatment as follows:
- NEW - Chronic hepatitis C infection not confirmed - Pending confirmation of chronic HCV infection to meet public drug coverage eligibility criteria.
- Informed Deferral - The patient, in consultation with the HCV team, has made the decision to defer treatment until they are ready or more stable.
- NEW - Public drug coverage approval pending - Pending decision on application for Ontario Drug Benefit coverage.
- Did Not Qualify for Drug Coverage - Client does not meet the criteria for Ontario Drug Benefit coverage, including the Exceptional Access Program for re-treatment; is unable to access compassionate drug coverage through a pharmaceutical company’s program; and/or does not have access to private drug coverage.
- Pregnancy - Client is pregnant or anticipates getting pregnant or their partner getting pregnant – where pregnancy is contraindicated in treatment of women and men who may impregnate a woman – during treatment and up to six months after treatment.
- Social Instability - Client’s social situation is currently too unstable to initiate treatment (i.e., client is currently homeless and living on the streets without access to shelter, unwilling or unable to engage with team supports, etc.).
- Medical Instability - Client’s current medical status is too unstable to initiate treatment (i.e., multiple acute co-morbidities).
- Lost to Follow-up - Client engaged with the program but has recently fallen out of touch with the team for various reasons. Team members are unable to locate or contact the client despite numerous attempts through various means.
- Lack of Ontario Health Insurance Plan (OHIP) Coverage - The patient does not have a valid Ontario health care due to loss of identification, being new to the province, being incarcerated in a provincial correctional facility, etc.
- NEW - Incarceration - Client has been incarcerated preventing treatment initiation in community.
- Death - Client died while in the ‘pre-treatment’ phase, either as a direct result of complications attributable to or unrelated to HCV.
Withdrawn from Treatment
A patient is considered withdrawn from treatment if they initiated treatment and have been deemed too unstable to continue treatment to completion or treatment has failed them (according to recommended treatment milestones).
- Side Effects - Adverse physical manifestations resulting from HCV treatment that are too severe to continue prescribed course of treatment. (Note: Side effects are less common with newer direct-acting antiviral drugs).
- Lost to Follow-up - Patient engaged in treatment for a period of time but has fallen out of touch with the team. Team members are unable to locate or contact client despite numerous attempts through various means.
- Medical Instability - Patient’s health/medical status became compromised over the course of treatment and was too unstable to safely continue treatment to completion.
- Death - Patient died while on treatment, either as a direct result of complications attributable to or unrelated to treatment/HCV.
- Psychiatric Manifestation - Patient experienced major psychiatric side effects from treatment (or not attributable to treatment) during the course of treatment, and these psychiatric manifestations were too severe to safely continue treatment to completion.
- Psycho-Social Instability - Patient initiated treatment but psycho-social factor(s) have created barriers to completing treatment. Examples may include, but are not limited to loss of housing, instability of mental health and/or addictions issues.
- Did Not Achieve Treatment Milestones - Discontinuation of treatment due to of lack of efficacy (as it relates to recommended treatment milestones).
5. Outreach
For the purposes of this report, outreach is defined as work provided in locations where community members congregate or socialize. Work conducted in co-located/onsite programs and services, such as Consumption and Treatment Services, do not qualify as outreach.
- Brief Outreach Contact - Refers to contacts at large public events, such as World Hepatitis Day, where contacts tend to be limited to handing out pamphlets, harm reduction materials, etc.
- Significant Outreach Contact - Refers to two-way, in-person interactions between HCV team staff/peers and a member of the priority population.
- Outreach Locations - See ‘Outreach Locations’ under ‘Testing’ above.
6. Education Presentations and Community Development
Education presentations consist of education provided to service users. Continuing medical education, professional development opportunities, HepCNET sessions, etc. should not be included in this section.
- Primary Presentation Focus - Please include the presentation focus that best aligns with the content presented.
- Priority Population - Please see ‘Priority Populations’.
- Health Care Providers - Refers to an audience type that provides health care services such as physicians, nurses, nurse practitioners, social workers.
- Service Providers - Refers to an audience type that provides non-health care services such as ASO, shelter, Ontario Works, Ontario Disability Support Program, John Howard Society staff.
- Number of Participants - List the number of participants to the best of your ability. We do not require exact numbers if the presentation is at a conference, grand rounds or other large event where the actual number of participants is difficult to ascertain or unknown.
- Number of Presentations - Add the number of presentations with the same audience type, presentation focus. If any of the data differs, you need to add them as separate presentations). This is a free-text box that will be added as a table below once the ‘insert’ button is clicked.
- Presentation Focus - List only the presentations that were provided for general education. Do not include any training sessions within this section (i.e., naloxone training sessions should not be included in this section. The Ontario Naloxone Program has its own reporting requirements, separate from the HCV Teams OCHART report where this information should be captured).
- Presentation Lead - List the number of presentations each team member provided. Not all team members must provide educational presentations.
- Community Development Session – Is a complex process (tailored to local context) that seeks to improve the lives of community members by building opportunities to enhance the capacity of service providers, community stakeholder agencies, businesses and government. Community development works with organizations (i.e., service providers, professionals, practitioners) rather than with individuals (i.e., service users, patients) and is separate from direct service delivery. The focus is to improve the responsiveness, accessibility, coordination and ultimately the impact of community services.
- Consultation - Is when a worker spends time with staff from one or more agencies for the purpose of assisting them to change practices, policies or approaches to better serve priority populations. One-to-one education session – refers to responses to individual requests for information when people phone, text, email or drop into your agency.
7. Shifts and Trends
- Report any shifts or changes in demand, specific to each program stream (i.e., testing, treatment, education/prevention), including services that are being requested that are currently not offered.
- Responding to Emerging Trends - Discuss how the team will adapt/respond to emerging trends within each program stream (i.e., education/prevention, testing, treatment) and what enhancements might be made and/or impacts to programming as a result of your response to these emerging trends.