Training on linking people to care and retaining them in care

Linkage to care and retention in care are key concepts that are driving the HIV field today. However, these terms invoke a variety of images and assumptions about how to accomplish such lofty expectations. Some may think that the responsibility of linking and retaining a patient in care falls solely on the clinician’s shoulders.  This is reinforced through such tools as the treatment cascade and measures such as viral suppression which quantify how a provider is performing at a facility and, as a result, allows for comparison around how different clinical providers are faring.

However, meeting the HIV care goal is not a one-sided venture. Non-clinical providers are also essential to the success of linking and retaining clients into care.

The path to care is not a linear process, as shown in this illustration.L&R for nonclinic

This windy road can often be long and difficult. There are detours and hazards along the path where individuals may veer off or experience road blocks, i.e., stigma, mental health issues, substance use, lack of employment, housing issues and even a lack of social support.

In some cases, the patient may fall off of the path or out of care which makes the job of the provider challenging and frustrating. More importantly, it can make a provider feel they have failed the client or patient.

Non-clinical providers, such as case/care managers, patient navigators and outreach workers, are equipped with skills that enable them to go off the “path” to support their clients and help get them back on their healthy path. Each day, non-clinical providers develop trusting relationships and understand the day-to-day barriers that clients face, i.e., child care, fear of being mistreated, not understanding health information.

Non-clinical providers wear multiple “hats” and are experts in various topics. However, to keep pace with changes in the field, training is a necessary ‘edge’ or tool. is a training resource for all non-clinical providers offering free live and on-demand trainings across New York State. The site allows you to learn both in and out of the classroom and, more importantly, on your own schedule.

Some of the trainings that are available and can help you gain that ‘edge’ in your work, include:

• Pre-Exposure Prophylaxis (PrEP) Guidance This on-demand webinar outlines the PrEP guidelines, released by and how these guidelines translate into harm reduction strategies for non-clinical providers.

• Positive Prevention: Connecting Care and Prevention This in-person training will teach strategies about how to help clients living with HIV avoid sexual and substance use behaviors which can result in negative health outcomes.

• HIV Viral Suppression: Partnerships for Success This online training will describe how HIV treatment adherence and retention in care are strongly linked with achieving viral suppression and improve health for clients living with HIV.

To view a complete listing of courses, check out

To register for a course:

1) Through the course list, click on Register beneath the course title and enter your account log-in information or register for a new account.

2) On the Course Registration page, click on Select to the far right of the course title.

3) On the confirmation page, click on Submit at the bottom of the page.

If you have any questions, please contact the NYSDOH AIDS Institute’s HIV, STI and Viral Hepatitis Training Programs at (518) 474-3045.

Written by Julie Schenkman and Clara DeSanctis


Hunting for Information on Linkage and Retention

We occasionally get questions about where one can go to get expert information on linkage to care and/or retention in care. Well, besides us, of course, there are a few options available. For websites, we suggest as an excellent starting point. Once there you will find a great many other resources.

If you want to get your information straight from the horse’s mouth then there is no better way to do so than to attend a conference, get to a poster presentation or a workshop and then mingle with the authors and presenters.


An interesting one is HIV 2014: Science, Community and Policy for Key Vulnerable Populations. It’s on May 5, 2014 and you can find the website at HIV 2014. The conference, this year, focuses on the UNAIDS’ vision of three zeros—zero new infections, zero AIDS related deaths, and zero discrimination. This year’s one day conference, which is also available on the web, will convene clinicians, scientists, activists and policy makers with the shared goal of improving outcomes for HIV in key vulnerable populations. And it’s being held right here in NYC, at the New York Academy of Sciences which is on Greenwich St.

If you are looking for something a little farther away but just as enlightening then perhaps you would be interested in the 9th International Conference on HIV Treatment and Prevention Adherence. This conference is sponsored by IAPAC (The International Association of Providers of AIDS Care. This year’s conference is 3 days long, from June 8th through June 10th and takes place in Miami. The conference provides an annual forumconf2 for the presentation and discussion of state-of-the-science HIV treatment and biomedical prevention adherence research, as well as current behavioral and clinical perspectives in practicum, within the context of achieving the maximum therapeutic and preventative benefit of antiretroviral therapy across the continuum of care. We expect that there will be a great deal of focus on linkage and retention work. And, in fact, we will be presenting a poster on our work on Sunday night of the conference. For more details you can go to: IAPAC.

Another option is the 20th International AIDS Conference which is being held in Melbourne, Australia from July 20th through July 25th. This conference is biennial and is definitely the premier gathering for those working in the field of HIV, as well as policymakers, people living with HIV and others committed to ending the epidemic. It is a tremendous opportunity for researchers from around the world to share the latest scientific advances in the field, learn from one another’s expertise, and develop strategies for advancing all facets of our collective efforts to treat and prevent HIV. We’re certainly interested in what comes out of this year’s conference in relation to linkage to care and retention in care. For more info: International AIDS

Finally there is the U.S. Conference on AIDS, this year being held in San Diego from October 2nd through October 5th. USCA is the largest AIDS-related gathering in the U.Sconf3., bringing together thousands of workers from all fronts of the HIV/AIDS epidemic—from case managers and physicians, to public health workers and advocates, people living with HIV/AIDS (PLWHAs) and policy-makers—to build national support networks, exchange the latest information and learn cutting-edge tools to address the challenges of HIV/AIDS. For more info on this conference check here: US AIDS Conference

Certainly there is a lot more going on than the four events listed above, but if you are looking for first hand information on linkage and/or retention it would be harder to find more suitable offerings. We’d certainly like to be able to get to all of them. Maybe next year.

Written by Steven Sawicki

From the Inside

Most of the focus in this blog so far has been on the systems and organization side. And that’s an important focus but it does leave out a considerable component. I’ve noted previously that HIV is both an individual health issue and a public health issue. Sometimes we seem to forget that the systems we put in place, the interventions we want to test, the measurements we take, all revolve around human beings. In this case they are human patientbeings with HIV. As part of our work with NYLinks we have made special efforts to ensure that consumers (people who are living with HIV) are at the table and have a full voice. They are, after all, the real experts.

Consumers play a big role in the regional groups that we have put together. We have often taken the time to ask them, from their own perspective, to name one thing that has been the most important to them when it comes to getting into care (linkage) or staying in care (retention). They have consistently said that relationship is the most important. They have said that if their interactions with staff are negative, then it is a real driving force for staying away, and that if their interactions are positive it will often be a driving force in the other direction. And they have been clear that when they say relationship they mean more than just with their doctor.

As an exercise we often ask people to think about their own medical care. In fact we have an exercise which we sometimes do in groups where we tape numbers from 1 through 10 on the wall and ask people to think about their last experience with a medical provider and go and stand next to the number that reflects how they feel about that visit with 1 being pretty terrible and 10 being terrific. We’ve never done one of these where everyone is gathered around the number 10. Most of the time there is a distribution with a few people in the 8 to 10 area, a bunch in the 5 to 7 area and the rest in the 1 to 4 area. As we have done this exercise over the past few years there has been subtle movement toward the lower end. One of the nice things about this exercise is that it does not seem to matter whether you are a medical professional, an academic expert, someone with a Masters or PhD, or a consumer when it comes to the kind of care you get. We often end up with consumers standing next to medical doctors standing next to social workers all around the number 3.

There are any number of factors that enter into play when it comes to how we feel about our medical visits and instead of getting into those here I’d like to come back to what the consumers who have been involved with us point out. It’s the relationship. Consumers tell us that if they get a neutral or negative response from the person at the door, the patient1receptionist, the person who rooms them, or some other staff person they come into contact with, that it carries over into and beyond the actual medical visit. Oddly enough, when it comes to looking at this from a systems perspective, most of the attention seems to fall on the medical providers themselves rather than on the support staff so we see a lot of information about making medical providers more patient friendly when, perhaps, that effort should be directed towards every person in the organization who has contact with patients.

Consumers tell us they want to feel welcomed by the place they are getting their care. I would argue that this is something we all want. Consumers that have struggled previously with getting into or staying in care have told us that it does not take much to move them in either direction as they wrestle with multiple issues, stigma, the stress of being diagnosed with HIV, and having to figure out what being HIV positive means.

I’m not suggesting that we drop everything else and focus only on the patient relationship but we should also not forget that we are dealing with people, regardless of why they are coming to see us, and that one of the simplest interventions we can implement is being welcoming.

Written by Steven Sawicki

The End of AIDS

By now you have probably heard, or read, the phrase “End of AIDS.” The phrase, as it is currently being used, is a bit inaccurate in that it does not so much refer to an actual end of AIDS but to a reduction of incidence of HIV that would lead to an extinction of AIDS. Incidence is the number of new cases of HIV over a period of time and if you can reduce incidence to a low enough level you can, essentially, end AIDS (although it will take quite a few years). When I first started working in HIV/AIDS the only way we thought the epidemic would be ended was through a cure. Later on we began to think that a vaccine might be the best way to end the epidemic. But time passed without either of those events occurring and while it may still be possible for one or the other to be discovered, there came an additional realization that because treatment had risen to such a high level that perhaps we could use it to end the epidemic.

The thinking goes like this: HIV/AIDS is an infectious disease that is transmitted from person to person. People who are HIV+ but who are virally suppressed have a much lesser chance (and by much lesser some would argue close to zero) of transmitting the disease to someone else. Therefore, if we can get enough people virally suppressed we can greatly reduce the incidence of HIV. When the incidence is reduced there are fewer newly infected persons which means there are even fewer people we need to get into treatment so they become virally suppressed which then further decreases the incidence and so on until we get to the point where the incidence is very small and the growth of HIV is at a minimal level.

Of course it is not quite that simple.


The interaction between individual and system and community is a complex formula with many different inputs. It would be great if everyone who became ill, went immediately for treatment and then got better. But we know from our own lives that this is not the case. On the other hand, HIV is something that we, as a system, have a lot of experience with. We know why people come to care and what barriers might exist to keep them away. We know the medications that work best and how to administer them. We know how to design systems of care that are respectful and meet the needs of those in care. And we know how to monitor those systems to make sure that we are progressing in a manner that improves on an ongoing basis.

It is this knowledge that gives us hope that we can improve our current systems so that they engage more people in care and retain more people in care. If we can do that we will begin to lower the incidence of HIV and once we start that process we are well on the way to the end of AIDS.

Written by Steven Sawicki

Assessing Readiness for Change

Improving linkage to care or retention in care for HIV+ people usually involves making changes to a current way of doing things so that the new way produces better results than the old way. At NYLinks we’ve come up with a model for how to go about assessing the stage an organization may be in for this readiness for change. For illustration purposes we’re going to focus on linkage to care here and save retention in care for a blog at a later date.

For our purposes, linkage to care is defined as connecting a newly HIV diagnosed individual with HIV primary care. The gap between the date of the confirmed diagnosis and the actual medical visit is the length of time that linkage took. We, at NYLinks, believe that linkage should take place in 30 days or less while the CDC measures successful linkage over a 90 day period.

So, let’s run through our assessment.

The first question is: Does your organization conduct HIV testing? This may seem like a simple question but it’s necessary. Let’s assume your organization does conduct HIV testing. The next question would be: How many patients tested positive for HIV at your organization in 2013? This gives us a baseline (the year could be any year actually as you may want to look back over the previous few years to see progress.) Then we want to see how your organization does with performance measurement so we ask: Is there a performance measurement system in place to routinely collect data and monitor the linkage rate of newly diagnosed clients to HIV primary care? And, if yes, do you track whether clients are linked to care within: 30 days, 60 days, 90 days, 6 months, other? Linkage

Then we’d like to know the average rate of linkage to HIV primary care for newly diagnosed patients at your facility. This is derived by dividing the total number of people who were linked to care at whatever rate you track them by the total number who tested positive. So, if you had 8 newly HIV diagnosed people last year and you linked 4 to care within 30 days, your 30 day rate would be 50%. In this section we are trying to determine an organization’s ability to generate data within a specific set of parameters.

Staying with performance measurement we want to now look at how your organization uses this data to evaluate success and drive effective decisions. This can be a range of answers from simply displaying the data in formats that enable accurate interpretation to validating data, tracking and analyzing by teams frequently enough to identify improvement needs and to set and assess measurable goals.

Based on all of the above it should be possible to rate your organization in terms of how well systematic monitoring is occurring. We suggest a strength scale of 1 to 5 with 1 being weak and 5 being strong.

Now we move on to quality improvement. We think it’s important to note whether an organization has a multidisciplinary QI project team in place that includes executive sponsorship (leader), project lead, data lead, and consumer(s) that works to improve linkage to care. Then it is important to know whether that team has used quality improvement methodology to improve linkage to care. And, if yes, what steps have been taken. Like the performance measurement above, this can happen in a range of different ways, everything from identifying and testing strategies then targeting the most significant causes to drilling down linkage data to identify common and/or individual causes that lead to a lack of timely linkage to care. Wherever the organization falls in that range they should be able to identify strategies that have been aimed at improving linkage to care and that have been tested in the past 6 months. Finally we’d like to know whether any of these strategies have been implemented on an organization wide scale and whether there is a plan for sustaining the improvement.

linkage 2

In broad terms there are three sections that are critical to generating improvement: access and analysis of data; presence and capacity of a QI system; and actualization of that QI process to achieve improvement. Data is important because data drives improvement. The more specific the data you have the better you are able to target your improvement efforts. Having a functioning QI/QM system enables you to use that data to develop tests of change that have the best chance of success. Being able to implement that QI process then enables you to test the change and act on the results, discarding what does not work, fine tuning what appears to be working, and implementing on a broader scale those interventions that are successful.

The assessment allows organizations to determine where on the spectrum they fall. An organization may need to perfect its data generation process or it may need to build a more diverse quality team before even thinking about implementing an intervention to produce change. Improving a data system or developing an improved Quality Team will also end up improving linkage to care as they enable an organization to make better choices about where improvement should happen.

Written by Steven Sawicki

Western New York State Regional Group NY Links December 2013 Meeting: A Recap

The Western New York State Regional Group closed 2013 with a very invigorating meeting on December 4th in Batavia, NY. The agenda for the day was full and included a review of quality improvement methods, a peer exchange, and a presentation of NY Links evaluation and epidemiological data. Representatives from the following organizations were in attendance: University of Rochester Medical Center, Trillium Health, Monroe County Department of Public Health, ABC, Evergreen Health Services, Anthony Jordan Health Center, and Women and Children’s Hospital Kaleida Health.

The objectives for the meeting were for regional group members to:

  • share their experiences with testing and systematizing their interventions;
  • discuss regional group level interventions and measures using Monroe County Department of Public Health and Rochester Regional Group as examples;
  • and understand the implications of regional HIV cascade data on next steps in WNYS Regional Group work.

Nanette Brey Magnani (pictured below), Quality Lead for the WNYS Regional Group, gave a review of the quality improvement approach to linkage to and retention in HIV care from the NY Links perspective (click here: for presentation slides). She began by explaining the six steps to quality improvement projects from a single agency perspective: 1. Review, collect and analyze baseline data; 2. Form an agency team, develop a work plan; 3. Investigate the process/problem; 4. Plan and test changes; 5. Evaluate results with key stakeholders; 6. Systematize change. This process is summarized by the Plan, Do, Study, Act (PDSA) Cycle presented in our previous post titled “Linkage, Retention, and New York Links”.


Pictured above: Nanette Brey Magnani presenting to WNYS Regional Group members

To contextualize this process, Nanette presented an example (Figure 1. below) that applies the PDSA cycle to an initiative aiming to increase the number of patients who were virally suppressed within a 6-month timeframe. This intervention was successfully implemented among youth clients by Women and Children’s Hospital Kaleida Health. In this example, the change is using a new teach back tool in an effort to achieve the objective of increasing understanding about the importance of taking medications correctly among patients. Proper adherence to medication increases the likelihood of becoming virally suppressed (to read more about HIV knowledge and viral suppression, see our previous post titled “A Summary of the Study ‘Personal HIV Knowledge, Appointment Adherence and HIV Outcomes’”). As shown in the diagram below, data is collected throughout the PDSA cycle to allow for evaluation of the initiative. If the tool or process needs revisions, it is tested again.


Figure 1. PDSA Cycle implemented by Women and Children’s Hospital Kaleida Health and presented by Nanette Brey Magnani.

Following this review, regional group members had the opportunity to learn from each other through peer presentations. Through these informative presentations, providers were able to showcase interventions currently being implemented at their sites including addressing linkage to care, retention in care, achieving and maintaining viral load suppression, and catering specifically to youth. The presentations revealed remarkable successes along with challenges. This sparked engaging and constructive conversation amongst the regional group members. The presentations showed such innovation and improvement that we hope to describe them more in-depth in future blog posts. In the meantime, slides from these presentations are posted here on the New York Links website.

In the afternoon, there was a presentation of epidemiological data for the WNY region from the New York state surveillance system by Carol-Ann Watson, an epidemiologist at the New York State Department of Health. The data shown included an update based on feedback from members of the regional group. Previously, reports of surveillance data for the WNY region excluded any lab reports of CD4 count or viral load used as proxies of HIV care that were done within 7 days of diagnosis. This was done to prevent overestimation of the rate of linkage to care due to the inclusion of any lab reports done as part of diagnostic testing. An unintentional consequence of excluding these records was that the rate of linkage to care was actually being underestimated. Carol-Ann’s update presented data that did not exclude labs reported within the first 7 days after diagnosis. Findings indicated that the linkage rates were closer to what providers have been reporting to NY Links. It was encouraging to all to learn that the rate of linkage to care in the region may actually be higher than previously estimated.

Written by Lea Hane

Linkage and Retention Across the Nation

The in+care Campaign is designed to bring together local, regional and national organizations that are focused on improving patient retention in HIV care. The Campaign team collects improvement strategies from participating HIV organizations to identify factors that would possibly be useful to HIV providers in other parts of the country. The in+care Campaign started in October of 2011 and has been collecting aggregate data around retention and viral suppression since then. The Campaign team will continue to collect this retention performance data for years to come. While we at NYLinks have been looking at linkage and retention on a regional level, the in+care Campaign has been looking at retention and viral load suppression on a national level.

Recently the in+care Campaign compiled a report that catalogued the types of retention and viral suppression quality improvement strategies that have been submitted by HIV organizations participating in the Campaign across the US. We asked the Campaign if we could share two of the data sets from their report.

The data we are going to share are from an analysis of improvement interventions from organizations across the country who participate in the Campaign. The interventions are categorized not only by type, but also by caseload size of the organization submitting them. It is important to note that the Campaign was not designed to identify which retention or viral suppression quality improvement strategy led to the most improvement in patient retention. Instead, the Campaign’s purpose is to provide a list of evidence based strategies in place across the Ryan White community. The assumption is that evidence based interventions will lead to improvement so long as they are implemented in a way that meets the core elements of the intervention.

Core elements are those things that must be done in order for the intervention to be successful as described by the people who created them and the people who evaluated them. In other words the core elements of baking a cake would be: having all the ingredients at hand in at least the amounts required by the recipe; having the equipment that will be needed for all steps in the process; combining the ingredients according to the recipe; and utilizing the technology infrastructure according to the recipe. There are certainly things you can do outside the core elements like frosting or no frosting, swapping out a different type of flour or sugar, using organic eggs in place of non-organic eggs, etc. These are often called adaptable elements. But we will get more into the elements of an intervention in a future post. Right now let’s see what’s happening across the nation in terms of HIV patient retention.

The first chart shows the percentage of interventions being used across the country. For the sake of comparison, interventions have been categorized according to category. The interventions were collected from participating organizations using an Intervention Update Form, or IUF. The form allowed organizations to list the interventions they were utilizing to improve retention and viral suppression. As noted on the chart, organizations could list multiple interventions and interventions could also be placed into more than one category. For example, a computer run reminder system might fall into both the Reminder System and Information system category.

IUF report 1

The second chart shows the categories of interventions being utilized by organizations according to the size of their caseloads.

IUF report 2

We hope you find this information useful and we look forward to sharing more about what is happening outside of New York, although our focus will always primarily remain in state.  If you would like more information on the in+care campaign you can find it here:

Until Next Time

Written by Steven Sawicki