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Linkage to Care Strategies
- 1. Linkage to Care Strategies CBO ORIENTATION 1/28
- 2. Importance of Linkage NHAS Goal #2: Increase access to care and optimize health outcomes for people living with HIV ◦ Step 1: Establish a seamless system to immediately link people to continuous and coordinated quality care when they learn they are infected with HIV. ◦ Linkage: 65% 85% “Some studies show that persons who stay in care during their first year of outpatient HIV medical care are more likely to start ART than persons with early lapses in care, have high adherence to ART, achieve virologic suppression, and practice safer sexual behaviors.” ◦ CDC HIV Prevention Guidelines, 2014
- 3. HPTN 065: TLC-PLUS: FEASIBILITY OF AN ENHANCED TEST, LINK-TO-CARE PLUS TREAT APPROACH FOR HIV PREVENTION IN THE US.: BERNARD M. BRANSON, MD; AUGUST 2010 HPTN 065: TLC-Plus Test Adoption of safer behaviors Enroll in Care Maintain viral suppression Decrease in HIV Transmission Treat HIV Positive LINKAGE TO CARE Initiation of ART Adherence to ART Testing Positive Prevention 96%Varies
- 5. Stage One: Plan Identify an area for improvement Recruit your team Study your current processes and results Determine your aims Establish your measures Select a change Brainstorm alternatives Develop an action plan and M&E process
- 6. Types of Change Improve Work Flow Change the Work Environment Client Interface Focus on Variation Error Proofing Time Management Eliminate Waste Optimize Inventory
- 7. Stage Two: Do Implement the action plan on a small scale and/or timeline Collect data Document successes and challenges - qualitative Assess system impact
- 8. Stage Three: Study Institute for HealthCare Improvement
- 9. Stage Four: Act Refine the change, based on data & reflection Standardize the change Monitor to ensure ongoing success Share your results Return to Step One: Plan
- 10. Throwing out the bucket… IMPROVEMENT Process Acceptance of baseline Reversible Superficial TRANSFORMATION System Baseline is problematic Irreversible Profound
- 13. Testing & Counseling Experience (post-poz)
- 14. Missed Connections: HIV-infected People Never in Care Top five reported reasons for not entering care ◦ 57% - Lack of money or health insurance ◦ 97% had income <300% of FPL ◦ 55% - Not wanting to think about being HIV-positive ◦ 55% - Feeling good and healthy ◦ 45% - Feeling depressed ◦ 43% - Not wanting to disclose HIV-positive status Bertolli J, Garland PM, Valverde EE, Beer L, Fagan JL, Hart C. Missed Connections: HIV-Infected Persons Never in Care. Public Health Reports. 2013;128(2):117–26.
- 15. Missed Connections: HIV-infected People Never in Care Top two factors reported as making care entry more likely ◦33% - Sufficient money or health insurance ◦31% - Feeling sick Bertolli J, Garland PM, Valverde EE, Beer L, Fagan JL, Hart C. Missed Connections: HIV-Infected Persons Never in Care. Public Health Reports. 2013;128(2):117–26.
- 16. CTR Experience of HIV+ persons who never entered medical care… Satisfied ◦ Prenatal clinic, drug treatment facility, or CTR site ◦ Provided with sufficient education or information after receiving results ◦ Level of comfort and support provided by the person conducting the HIV test Garland PM, Valverde EE, Fagan F, Beer L, Sanders C, Hillman D, et al. HIV counseling, testing, and referral experiences of persons diagnosed with HIV who have never entered HIV medical care. AIDS Educ Prev. 2011;23(Suppl 3):117–127.
- 17. CTR Experience of HIV+ persons who never entered medical care… Dissatisfied ◦ STD clinic, inpatient facility, private doctor’s office or infectious disease clinic ◦ Perceived lack of counseling, insufficient counseling, poor quality of counseling ◦ Inadequate information or missing information What could have been done differently? ◦ More counseling at diagnosis: “They could’ve sat down and really talked to me about it.” Garland PM, Valverde EE, Fagan F, Beer L, Sanders C, Hillman D, et al. HIV counseling, testing, and referral experiences of persons diagnosed with HIV who have never entered HIV medical care. AIDS Educ Prev. 2011;23(Suppl 3):117–127.
- 18. Sources of information Qualitative feedback Linked clients Returning-to-care clients (out-of-care) Consumer advisory board/Peers Testers Mystery shopper
- 19. Examples of Improvement INFORMATION: MESSAGING Purpose of and importance of entering HIV care as soon as possible Existence of insurance, care & medication support programs Existence of support services for transportation, food, benefits management, etcetera
- 20. Messaging ◦ Determine ◦ Who (delivers/receives) ◦ Just testers? Follow-up call? Receiving agency? ◦ All positives? Different for new versus repeat? High-risk negatives? ◦ What & how? ◦ Brief, positive, easy-to-understand (but not patronizing), and consistent ◦ Run it by consumers ◦ Training & Monitoring ◦ Tracking & Evaluation
- 21. Example Benefits of entering care ◦ Studies show that people who enter care soon after testing positive are far more likely to live long, healthy lives than those who delay. ◦ There is treatment available to keep you well and also reduce your risk of passing HIV to one of your partners. ◦ Some people put off visiting a medical provider until they feel sick, which hurts their chances of full treatment success because HIV is doing harm to your body even if you can’t feel it. ◦ We recommend that everyone who tests positive complete at least one visit with a medical specialist within 90 days of testing to confirm your diagnosis, evaluate where you’re at, and discuss your options for moving forward.
- 22. Example Services available to help enter care ◦ There are programs and funds available to help those who test positive to access treatment, including support with insurance, medication, housing, and other benefits. ◦ Even if you decide to delay medical treatment, we recommend you meet with a case manager to determine what sort of benefits are available to you and how to take advantage of them.
- 23. Examples of Improvement COUNSELING: APPROACH Trauma-informed ◦ Understanding stigma – racism, homophobia, transphobia, mental illness, drug use, poverty, etcetera Motivational Interviewing ◦ ARTAS ◦ Stages of Change
- 27. Referrals
- 28. Examples of Improvement ACTIVE VERSUS PASSIVE Preparation ◦ Relationships ◦ Coordination vs. collaboration ◦ Resource Guide Facilitating the connection ◦ Menu of options ◦ Hierarchy of needs ◦ Making the call Follow-through ◦ It’s not over ‘til it’s over
- 31. Engagement
- 32. Examples of Improvement FIRST IMPRESSION New patient friendly Red carpet treatment Orientation Online information
- 33. Examples of Improvement CARE TEAM COORDINATION Huddles to discuss new patients Linkage/navigation specialist
- 34. Link and Retain: The Official Blog of NY Links (linkandretain.wordpress.com)
- 35. WHAT HAS WORKED FOR YOUR AGENCIES?
Notas del editor
- *Keeping CD4 cells (over 500) *Inflammation Still doing large-scale studies to see if the want to 100% no doubt recommend starting immediately for everyone *Most important– knowing your levels so you can make that decision
- New York SPNS: The NY Links Initiative will bridge systemic gaps between HIV-related services within New York State and achieve better outcomes for persons living with HIV/AIDS through improving systems for monitoring, recording, and accessing information about HIV care in NYS. The first two years will focus on establishing three successive “Waves” of collaboratives composed of traditional and non-traditional healthcare and supportive services providers in specific high-incidence communities. These collaboratives will create a learning environment in which systemic collaboration and linkage innovations can be tested and measured. The final two years will focus on conducting a statewide scale-up of strategies shown to have promise during the Collaborative phase, as well as a subsequent evaluation of their effectiveness and sustainability.
- Recruiting the team: balance between people in power, people on the ground, consumers – consider collaboratives, or other external parties Studying your own process – includes your work flow & client experience, but also the way you track and monitor data… who knows which clients link and which ones don’t? What are your sources of information?
- CTR training – only 3 days, focuses a lot on the testing/risk reduction/paperwork aspect of things… touches on delivering positive results, but actual testers may require additional training on post-poz results counseling and linkage…
- Might mean that your program should go to these places, offer your services…
- Not everyone’s linkage gaps are caused by the same issues, and not all are related to the CTR experience… do some investigation into what your CTR program experience is like– both for negatives & positives
- Training people on specific messaging; making it a part of required info like partner services. The good and bad of variation.
- Reducing variation in outcomes– is everyone getting the same message? NY Links program – has manual for a retention intervention
- “A program, organization, or system that is trauma-informed: Realizes the widespread impact of trauma and understands potential paths for recovery; Recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; Responds by fully integrating knowledge about trauma into policies, procedures, and practices; and Seeks to actively resist re-traumatization.” Motivational Interviewing: person-centered, collaborative conversation, examines person’s own motivation for change, addresses ambivalence, amplifies change talk ARTAS – evidence-based linkage intervention, consists of 5 sessions w/ a linkage coordinator w/in 90 days, goal of successful linkage/engagement – main elements are strengths assessment, individual goal-setting process, and fostering empowerment and self-efficacy-- manual online -- some interventions merge the post-test counseling sessions w/ the first ARTAS counseling session Ability to read the client– using personal anecdotes and experiences in the field w/ linkage & treatment success versus pulling out the facts versus stepping back and just listening/supporting
- Knowing how to quickly assess someone’s stage and reacting appropriately… Pre-contemplation – information about treatment and benefits, pros and cons, explore reasoning for coming into testing– elicit self-care motivational statements… maybe reflect on expressed desire w/ regards for transmission Contemplation – highlight self-efficacy, clarify expectations of the linkage process and stress pro’s, reflect self-motivational statements Action – straight to menu of options, next steps to take, address barriers, lift up positive/motivational statements Relapse – learning experience, reflection on obstacles, acknowledgment of steps taken to get back on track, etc
- Trying to identify by clues in what clients say what aspect of their internal dialogue may end up preventing them from linking successfully…
- Warm handoff and rapid access to services – OPH Washington State Having navigating double vision… Thinking like an HMO – systems approach to coordinated care Thinking like a client – customer service approach to care
- Relationships – Setting up a formal relationship between testing sites and case management/provider sites w/ the common goal of linking 100% of people who test. Understand each other’s mission and objectives. CDC – Prevention Guidelines 2014 Coordination vs. collaboration: Coordination is a process of creating more client-centered, streamlined, and nonduplicative systems that clarify communication methods, staff roles, use of health information, and reimbursement policies and procedures. Collaboration is working with another person, organization, or group for mutual benefit by exchanging information, sharing resources, or enhancing the other’s capacity, often to achieve a common goal or purposes Develop written agreements between HIV testing providers and HIV health care providers that define roles and responsibilities for linking persons to HIV care and for supporting retention in care Also helps when developing feedback for linkage Promoting collaboration among providers is also one of the recommended NHAS actions for improving linkage. Resource Guide – Someone at the agency should visit each of the clinics– maybe take the time to attend an appointment w/ a client if possible, to really know what’s going on at each agency. More fleshed out for providers, but thorough in other areas – also a good collaborative project, like Common Ground’s Resource Guide. Who does the referring agency call? Does that individual know the importance of the link and have their own linkage work flow that start when you make that call? What hours of the day can you call them? Who is their back-up? What is the plan if that agency is closed when you need to make a referral? The Resource Guide should be complete, up-to-date, shared user notes – specifics like ‘discrete, lots of Spanish-speakers, waiting list currently 2 weeks out, etc.’ Every tester should be trained on it, and updated onany significant changes over time. Menu of options – How to determine what provider you make a referral to– first of all: KNOW THE PROVIDERS!! Information that the LCCs provide: location of the agency, size, co-located services & explanation of what they are, other considerations for specific populations – women, adolescents, high-need, trans, etc. Also: importance of having an ID doctor in addition to primary care doctor, for those who already have a PCP. Hierarchy of needs – If the client is not ready to make a medical appointment, the linkage goal then becomes to get the client “as close to comprehensive medical care as possible” through one or more of the following referrals: 1. Linkage to: a. Case manager at medically-linked site; or b. Case manager at non-medically linked site. 2. Linkage to other support services, such as substance use or mental health services, including an HIV positive support group. Making the call – over and over, the main thing I found in the literature review was the importance of making active referrals! Make the call! And if you can’t because of the time, figure that out w/in your collaboration. Tentative scheduling, open slots, etcetera. People often require someone to fill in as a social enabler or they will put it off/ignore it. Follow-through – Like where most improvements will be w/ work flow – referral follow-ups, tracking, etc. Maybe advice from LCC program on how to find people? Also, providing the client a name or number at the testing site that they can call if they get lost in the abyss… You haven’t passed off that individual until they’ve reached the other side.
- Linkage vs. engagement… get people through the door, but then from intake to labs, from labs to provider, from provider to next appt… really engagement through viral suppression and then maintenance
- How would someone feel walking into your clinic/case management services for the first time ever? What can you do to make that better? How do you act when expecting someone new? Also taking into account demographics – what would you think if you were a mother? What would you think if you were transgender? What would you think if you were a youth? What would you think if you undocumented? New clients (or those re-engaging into care) are given appointments the next business day after they contact any public health clinic in Washington, D.C. They are assigned a “Red Carpet Concierge” who can be contacted directly to arrange these appointments and a phrase or “code word” that they can use when they arrive at the clinic as a Red Carpet member. Clients first see a caseworker who does an initial intake and completes lab work. Within 7 to 10 days of the intake, clients meet with a physician to go over baseline lab results and determine a course of treatment. Another example: Testing and linkage staff give clients a VIP card that includes their own name & contact info, the location and time of the scheduled appointment, along with the name and number of the person that will conduct their intake and the name/number of the clinic director. Frequently cited is the importance of a new patient orientation, which is often peer-led. Includes guided tour of the facility, introduction to the different services offered, introduction to key staff members, and a brief overview of what to expect for the first few months. Peers can also share a bit of their own journey. Have information for newly-diagnosed clients on your website so they can look in the privacy of their own home – GO Care example, w/ ability to schedule an appointment and phone call or ask a confidential question.
- Don’t work in silos! Have the testing site verbally connect on the pass-off. Make sure intake staff touch base with case managers and providers. Consider introducing the provider if they’re around during the lab visit, so the patient at least knows what to expect when they come back. Have a huddle about new patients coming in so that everyone’s aware of all issues and the team knows what is pending– insurance, medication apps, therapy– or any other issues of note– homelessness, etc. Linkage/navigation specialist – more expensive intervention – need funds for a salary, unless relatively low number of positives and then maybe it is part of someone else’s job. Benefits: A stable relationship throughout the fragmented process of linking to care. A moving piece that can connect the silos. An advocate for a new patient as they figure out a whole new world of insurance, services, and medication. A person who is aware of the ‘big picture’ for the client– what case managers would like to be, but often can’t due to caseload. Someone for whom success for the client is indicator of success, while the rest of us are looking at the population approach. A time-limited intervention. Needs to be accessible, accepting, adaptable, accountable. Who can this be? Looking at resources w/in agency vs. w/in region. Communicating needs to state and other funders.
- Persistance