The Focus of Attention is a medical/social program improving accessibility and quality of health care services for HIV-positive patients by developing social services in health care. The program has received the Best Social Project in Russia Award in the Health Care/Social Projects category. The program is implemented by the Intersectoral Social Partnership Foundation together with the Janssen Pharmaceutical Companies of Johnson and Johnson.
Beneficiaries
- HIV-positive patients
- AIDS centers
- Local NGOs
- Health care and social security workers
Project working language: Russian
Time frame: since April 2018 till now
Status: active
Updated: 02.12.2019
Contact details
Yulia Vesenyova, Senior manager, Communications and Public Affairs Russia and CIS, Janssen Inc.
+7 (495) 755-8357
Project web-site
https://spdfund.org/2019/02/12/vcv/
The urgency of the social problem
Epidemiological situation of HIV in Russia
As of June 30, 2018, the Russian Federation had a total of 1,272,403 registered HIV cases. Out of this number, 293,960 HIV-positive people have died due to various reasons. By the end of Q1 of 2018, Russia had 978,443 living people diagnosed with HIV. Over the same period, local AIDS centers reported 51,744 new HIV cases, which is 0.9% lower than during the same period of 2017. As of Jun 30, 2018, the HIV rate in Russia was 666.1 per 100,000 people. Since 2005, the number of new HIV cases has been growing in Russia. In 2011-2015, the average annual increase was 10%; in 2016, 4.1%; in 2017, 2.2%. In H1 of 2018, 713,018 HIV-positive Russians were signed up for regular checkups, which is 71.7% of the total number of HIV-diagnosed people living at the time. The number of patients receiving antiretroviral therapy was 378,532; 15,782 of them terminated ART in 2018. Treatment covered 38.1% of all the living people diagnosed with HIV. Among those signed up for regular checkups, the percentage of those covered by antiretroviral therapy was 53.1%. In H1 of 2018, 55,220 HIV-positive people started antiretroviral therapy. The current coverage rate is insufficient for preventative purposes and does not allow to reduce the spread of the disease and the HIV mortality rate dramatically.
External reasons for initiating the program
Even though Russia has made some progress in expanding ART coverage in recent years, under the current healthcare system there is a shortage of additional services for HIV-positive people, which would help them to accept the diagnosis quicker, prepare and start lifelong therapy, realize the importance of regular checkups and sign up for them. This, in turn, would help limit the spread of the disease and reduce the HIV mortality rate, as well as help the patients remain economically and socially active. Achieving the 90-90-90 target, set by the 2016 UN General Assembly High-Level Meeting on Ending AIDS and endorsed by Russia, requires earlier start of therapy, assisting patients with social adaptation and rehabilitation and providing them necessary support, including through NGOs. It is important to provide patients with social and psychological support, because it is very important for the effectiveness of their treatment and for preventing further spreading of HIV.
The Focus of Attention contributes to the Sustainable Development Goals of good health and well-being for people, preventing and fighting HIV, as well as building partnership for sustainable development.
Internal reasons for initiating the program
Fighting HIV around the globe has always been one of Janssen’s top priorities. The Company’s goal for the next 25 years is to ensure that children are born without HIV, adults and teenagers are protection from infection, and people living with HIV have access to necessary treatment.
For many years, Janssen has been working with Russian NGOs and other stakeholders to support HIV patients and make treatment more accessible:
- The Company supports the Community Advisory Board in Eastern Europe and Central Asia (EECA CAB).
- Janssen supports workshops for healthcare professionals working in Russian penitentiary institutions and efforts to improve assistance provided to HIV-positive and hepatitis patients in prison.
- The Company supports the website of the AIDS.CENTER Foundation (http://spid.center).
- Janssen participates in organizing regional schools for patients living with HIV.
- In April 2018, Janssen supported the launch of a medical and social support program for people living with HIV, The Focus of Attention. The program’s mission is to improve the quality of life for HIV patients[1] by developing social services in the healthcare system.
[1] HIV-positive women planning to get pregnant, pregnant HIV-positive women, HIV-positive teenagers, HIV patients under 50 years, other categories of patients.
“Supporting patients and local communities is one of strategic priorities for Janssen in Russia. We want to be a reliable partner for the Russian healthcare system in fighting HIV. This includes our support for social projects in this area. Considering how prevalent HIV is in Russia, controlling this disease is a very heavy burden for the healthcare system. As part of the Focus of Attention program, the Company provides resources for offering additional services to patients, including overtime hours for consultations by specialists, the Patient School, support groups, social security, etc. By making AIDS centers more attractive through additional patient-oriented services, the program helps the patients accept the diagnosis, commit to therapy and regular checkups, which ultimately helps control the spread of HIV infection in Russia.”
Target audience and stakeholders of the project
HIV-positive people and their families; non-medical staff at health care institutions and NGOs: social workers, peer consultants, therapists; doctors, nurses, other medical staff at health care institutions.
Mission and goals
The program’s mission is to improve the quality of life for HIV patients[1] by developing social services in health care.
Key goals:
- Getting patients involved in treatment and increasing the rate of patients receiving treatment
- Addressing non-medical issues hindering patients from receiving health care services
- Cultivating patients’ commitment to treatment
- Developing best practices for social services complementing standard health care services and improving their efficiency
Preparing a patient for treatment, educating them about the process and motivating them to follow a healthy lifestyle are all important elements. We aim to make patients committed to therapy and prevent them from giving up therapy for non-medical reasons. The health care system should adopt modern methods of social service based on a multiprofessional and customer-centered approach, enhance non-medical services and make AIDS centers more appealing to patients. The program aims to assist with the implementation of the Health Care Services Standards and the HIV Prevention program.
[1] HIV-positive women planning to get pregnant, pregnant HIV-positive women, HIV-positive teenagers, HIV patients under 50 years, other categories of patients.
Coverage
- Barnaul
- Chelyabinsk
- Irkutsk
- Kaliningrad
- Kazan
- Kemerovo
- Krasnodar
- Leningrad Oblast
- Orenburg
- Perm
- Samara
- Saratov
- Tver
- Yekaterinburg
Project Description
The Focus of Attention program was designed to help develop the potential of the healthcare system in containing HIV.
Program participants receive social and paramedical services, which help strengthen their commitment to therapy and regular checkups, which ultimately improves the quality of life for people living with HIV.
The program offers a range of services for patients which the AIDS center together with a local NGO can provide in a region, considering key problems[1] that HIV patients encounter in this particular region. The services include the following:
- face-to-face consultations (by medical specialist on non-medical or paramedical aspects of treatment, peer consultations, social support, psychological consultations)
- remote consultations (hotline, online consultations)
- group sessions (Patient School, support groups). Group sessions, including the Patient School and support groups, address a number of critical issues, like informing patients about HIV and available therapies, building the patient’s commitment to therapy, sharing practical recommendations on taking medications, helping with practical issues of living with HIV and social adaptation.
Since its launch in April 2018, the program has covered (as of September 2019) over 5,700 patients in 14 provinces of Russia, with partnership networks in Barnaul, Chelyabinsk, Irkutsk, Kaliningrad, Kazan, Kemerovo, Krasnodar, Leningrad Oblast, Orenburg, Perm, Samara, Saratov, Tver and Yekaterinburg.
In addition to services for patients, the program includes resources and information support for the development of best practices in providing patients with various services through a partnership network consisting of local NGOs, AIDS centers, other medical institutions and social security services.
For local partners (AIDS centers and NGOs), the program offers an opportunity to share best practices and build long-term, strategic partnership.
In addition to providing services to patients, the program includes training sessions for healthcare and social workers. For example, they are trained in non-medical support and effective consultancy skills, as well as sessions to prevent occupational burnout.
The Focus of Attention program is implemented by the Intersectoral Social Partnership Foundation, which has over 10 years of experience in implementing large scale service initiatives in health care. The program includes targeted services, a broad range of interaction formats between program clients and these services, and an efficient performance evaluation system which tracks both quantitative (number of clients, number of services provided) and qualitative (demand for a particular service, satisfaction with the program, etc.) indicators.
In 2019, the program further developed the service component, including the following:
- a broader information campaign to let the clients know about the services available through medical centers and NGOs
- circulating brand-free promotional materials (posters, leaflets, cards, etc.) about the program with contact information to attract more clients
- organizing multiprofessional teams of specialists based on a client-centric approach
- building partnerships within the team and with external partners
- providing social and medical support services to clients
The Focus of Attention is supported by communications efforts, informing patient and civil society communities about the purpose of the program, its current results and its potential in stopping the spread of HIV. In 2019, the program received the Best Social Project in Russia Award in the Social Healthcare category.
For example, the program helped implement the Patient School format, which is part of the National HIV Initial Response Standard.
“Russia has certain standards for helping people living with HIV, and the Patient School is part of these standards. The Focus of Attention has helped us conduct such schools more frequently and more effectively. In additional to medical help, patients also need social and psychological support, especially at the stages of accepting the diagnosis and starting therapy. At the Patient School, people learn about the disease, about living with HIV and about available therapies. After talking to doctors, peer consultants and other patients, an HIV-positive patient becomes more responsible in caring for their own health, promptly starting therapy and committing to treatment.”
Improving the quality of life for people living with HIV, strengthening their commitment to therapy and making AIDS centers more attractive will help the patients better control the disease, which ultimately means HIV will be better controlled overall.
Support projects
The Intersectoral Social Partnership Foundation implements the Focus of Attention program as part of its Public Healthcare Improvement Strategy. The Foundation’s other projects (for example, the Resource Center for Healthcare Service Providers) contribute to the goals of the Focus of Attention, expanding its geographical and social footprint.
Team and Partners
Team
The project team consists of specialists in managing nonprofit social projects, oversight and evaluation specialists, donor company representatives, and regional teams, including a coordinator (the head of the regional partner organization and personnel directly involved in providing services).
Partners
The Intersectoral Social Partnership Foundation is our partner in this project. Simultaneously, the Foundation is the source of expertise for regional NGOs and AIDS centers. (In 2019, the program is implemented in the regions together with 12 AIDS centers and eight local NGOs.)
Resources
Financial resources
The program is being implemented through a targeted donation. The program’s budget was 31,001,038.00 rubles in 2018 and 31,300,000 rubles in 2019.
Human resources
There are specialists from a number of areas taking part in this program: healthcare professionals (AIDS center management, infectiologists, nurses), non-medical specialists and social workers (psychologists, social security workers, peer consultants). Company employees from the public relations and communications department regularly participate in key meetings of the ISP Foundation, NGOs and healthcare specialists, so that, on the one hand, they are aware of difficulties and issues that may have arisen, and on the other, they can discuss how to deal with these problems.
Technological and material resources
The program offers services to clients through regional AIDS centers and their partners, i.e., using existing infrastructure for healthcare and social support. Thanks to the program’s financial support, patient get access to additional services by participating specialists, sometimes in overtime hours, while regional operators can launch their own information campaign to attract clients: publish promotional materials about the program and its services (leaflets, cards, booklets, posters), set up hotlines and mobile lines for remote consultations. Also, all the participants receive guidelines for their work: how to consult clients, how to treat HIV, how to develop commitment to therapy.
[1] Remoteness and inconvenient hours of the local AIDS center, the lack of commitment to ART, HIV denialism, etc.
Achieved results
Immediate results
- In 2018, there were 2,395 people in the program; in 2019 (as of September), their number increased to 3,314.
- In 2018, program members received 23,417 services. These included:
- 5,682 hotline consultations and 6,115 personalized remote consultations;
- 1,972 support group meetings;
- 5,599 consultations by medical specialists – namely, infectiologists and nurses;
- 4,049 consultations by therapists and social workers.
- 100 health care professionals, including 31 doctors, learned effective consulting skills and ways to organize medical/social support.
Social results
The review performed after the program’s first year showed that participants were highly satisfied with their interaction with the specialists. 96% of the respondents said they were able to get answers to their questions; 97% said they were satisfied with the quality of information provided to them; and 98% said they were satisfied with the specialists’ attitude.
Over 90% said the program had a positive effect on the patients. 76% said the program helped them get answers to the questions which were important to them. According to 41% of the patients, the project helped them better understand recommendations by the specialists. Many of the participants said the program improved their perception of AIDS center specialists (26%) and caused them to trust specialists more (29%). Lastly, 28% of the respondents said the program strengthened their commitment to therapy and regular checkups, specifically motivating them to follow doctors’ recommendations. Almost a third (31%) of the respondents think that their condition improved because of their participation in the program.
Internal evaluation
The program’s management includes a monitoring system, which consists of an number of tools: a set of indicators, benchmarks, report forms and feedback procedures. Monitoring is performed by all the program participants. Monitoring means systematic collection of feedback and reports on how effective the program is, whether it achieves its objectives and how resources are being used. All this data is necessary, first, to manage the program efficiently, and second, for reporting purposes.
Quantitative indicators are reported monthly. Qualitative reports are prepared twice in the course of the program. The monitoring system uses only anonymized statistical data. Patients’ personal data, their clinical records, privileged information, other confidential information – none of this is reported.
At the end of each year, the program’s performance is evaluated with independent evaluation specialists who are members of the Association of Specialists in Program and Policy Evaluation.
External evaluation
Independent evaluation by a group of experts (Process Consulting LLC) has demonstrated that the program makes a significant contribution to developing the potential of AIDS centers in making them more accessible and building commitment to therapy through patient-centric approach. The program’s performance in April-December 2018 was performed by a group of monitoring and evaluation specialists contracted by the Intersectoral Social Partnership Foundation. It was based on the analysis of the monitoring system’s indicators, which were collected throughout the course of the program, from start to finish, and involved face-to-face and remote interviews with workers and collection of feedback from clients.
Feedback from beneficiaries:
“Commitment to therapy is critical not only to HIV patients but also to health care in general. If a patient takes the prescribed medicines regularly, the amount of virus in their blood gets close to zero. This not only enables the patient to have a normal life but also, based on the latest research, makes it practically impossible for them to infect other people. Patients participating in the program tell us that the program motivates them to regularly contact specialists and visit AIDS centers. The program helps make AIDS centers a source of real support for people living with HIV.”
Special Features and Best Practices
- The program makes social services more accessible to people living with HIV and provides patients with social and psychological services, which are highly important in preparation for treatment, for therapy to be efficient and to prevent the spread of HIV.
- All the key characteristics of the program meet the needs of all the categories of patients. The service model used in the program makes it possible to customize services for every patient, offering them in a format that would be convenient for them.
- The program makes a significant contribution to the professional development of the specialists involved in it. Information support, methodology and administrative assistance for regional operators are integral elements of the program. This helps improve the quality of services and develop the potential of all the workers for future sustainable operation.
- The program management system includes a system monitoring its indicators, which makes it possible to perform evaluation of the program’s performance at any given time, efficiently manage the program and promptly respond to arising difficulties or deviations from plan or methodology.
Challenges and Solutions
Program workers report that the most difficult category of patients are children and teenagers, as well as patients over 40. Many of the participants don’t have much experience offering social services or psychological help to these categories. The concept and methodology for working with these groups are still underdeveloped in Russia. In order to address this challenge, the ISP Foundation is designing and testing new methods, which take into account the special circumstances of these categories. These new methods will be gradually introduced in future stages of the Focus of Attention program and other programs.
Given the current situation in Russia with HIV treatment, successful implementation of such programs without support from socially responsible donors is unlikely.
Plans for the Future
In 2019-2020, we plan to continue developing the potential of regional NGOs and AIDS centers by offering them broader access to methodology, information and guidelines on social work. As in 2018, program operators will receive organizational and methodological consultations on the program – for example, by joining workshops for healthcare professionals on working with patients (how to advise patients on preparation for therapy and commitment, how to organize the Patient School, how to provide social support, how to prevent occupational burnout, etc.).
Recommendations
It is necessary to develop guidelines for AIDS centers on social and psychological work with teenagers and older patients. We plan to create working groups from active participants in the program and ask them to design such guidelines.
We should collect and disseminate the best practices in using remote and online tools to communicate with various groups of clients.