Core Programme Clusters

Communicable Diseases and Disease Surveillance

WHO Technical Assistance to HIV/AIDS Prevention and Control in India

Meetings and Workshops: Summary and Recommendations

ART in India – An Intersectoral M&E Workshop, New Delhi, 27^th – 28^th April, 2005

      Executive Summary

      Proceedings

     Inaugural Session

      M & E Session (Day 1)

      Partners Session (Day 2)

      Valedictory Session

      Annexure

      Agenda

      Terms of Reference of Working Groups

      Statewise Distribution of Patients in NACO ART Centers, March 2005

      Centrewise Distribution of Patients on ART in Intersectoral / Private partners

      List of Participants

      Revised Recoding and Reporting Formats (M & E tools)

Executive Summary

An intersectoral M&E workshop on ART was held on 27^th and 28^th April 2005, at the India Habitat Centre, New Delhi. The workshop was organized by the National AIDS Control Organization (NACO) with the support of the World Health Organization (WHO). 

A total of 71 participants from 25 ART centers, Intersectoral Partners (Railways, SAIL, ESI, Armed Forces), SACS, NGOs, Private Hospitals, Clinton Foundation, UN partners and WHO discussed and proposed changes to the existing M&E tools used in the national ART programme. 

The objectives of the workshop were:

      To review the existing M&E tools in relation to ART reporting.

      To discuss components of a future computerized ART information system

      To apprise and involve intersectoral partners, the private sector and NGOs on the National ART programme and M&E tools

The workshop began with technical presentations on experiences with Monitoring and Evaluation globally and in India. Representative from WHO-SEARO shared the experience on the global recommendations for M&E of HIV care and treatment programmes. Representatives from NACO apprised the participants on the status of the National ART Programme and the M&E tools currently used by the programme. Representative from Government Hospital of Thoracic Medicine (GHTM) Tambaram, Chennai presented the set-up and experience with a computerized monitoring system used for the ART programme at the institution. 

The participants were then divided into four groups to review and discuss the proposed changes in the seven registers and forms currently used by NACO in the ART centers. The participants presented their findings and recommendations to the plenary. 

On the second day, experience of ART implementation in Railways, ESI, Armed Forces, SAIL, two private hospitals, Kerala state, and certain NGOs was shared by the participants. 

The outcomes of the workshop are expected to contribute to:

      Updated and revised Recording & Reporting (M&E) Tools

      An outline for a Computerized ART Information System

      Appraisal and involvement of Intersectoral partners,  private & corporate sectors in the National ART Programme

      Strengthening the information system on ART in the country

Proceedings

Inaugural Session

An intersectoral M&E workshop was held on 27^th and 28^th April 2005, at the India Habitat Centre, New Delhi. The workshop was organized by the National AIDS Control Organization (NACO) with the support of World Health Organization (WHO), India Office.

A total of 71 participants attended the workshop including senior medical officers/ representatives from 25 ART centers; Intersectoral partners (Railways, SAIL, ESI, Armed Forces); six WHO ART Consultants; M&E officers from Tamil Nadu State AIDS Control Society and Andhra Pradesh State AIDS Control Society; representatives from State AIDS Control Societies of Rajasthan, Kerala, Mumbai & Maharashtra; representatives from NGOs: YRG Care, SVYM, Freedom Foundation, Population Foundation, ARCON; Private Hospitals: CMC Vellore, Apollo Hospital, Delhi, Ganga Ram Hospital, Delhi, Ruby Hall Clinic, Pune; bilateral and International Partners: Clinton Foundation, USAID, UNAIDS and WHO (List of participants see Annexure V). The participants discussed and proposed changes to the M&E tools currently used in the ART programme and were updated on the experience of ART implementation in different sectors (see Agenda in Annexure I, and TOR of working group in Annexure II)

Dr. A.K. Khera, Joint Director (Training), NACO, welcomed the participants and provided an overview of the goals and objectives of the workshop as well as an overview of the National AIDS Control Programme with special reference to ART in India. He outlined the current HIV/AIDS situation and the national response, described the ART expansion process, and provided an update on the status of ART implementation and the challenges ahead.

Dr. S.J. Habeyeb, WHO Representative to India, welcomed the participants and expressed his strong support to the ART scale-up process, including the importance of M&E. He emphasizd that the ART implementation process is demanding and challenged the participants to be pro-active and find local solutions to problems that they may face.

In a round of introduction the participants provided details about their institutions / organization and the field of their professional expertise.

Dr. B.B Rewari, National Consultant (ART) delivered the vote of thanks.

M & E Session (Day 1)

The M&E session began with a presentation by Dr. Renu Garg, WHO-SEARO, on global recommendations on “Monitoring and evaluation of HIV care and ART programmes”. She highlighted the importance of M&E for strategic information to influence policy and for programme development. She explained the “three one” principle which highlight the importance of one unified M&E system for the country, one strategic framework and one coordinating mechanism, and presented the global recommendation to allocate 5-10% of the budget for M&E. She also presented the M&E principles developed during the “National Consultation on Scaling Up ART”, January 28-29, 2004 in Delhi, presented core national indicators and the pyramidal information flow system where information requirements are biggest at the implementation level. She further discussed the issues of a paper based versus a computerized information system. She also highlighted some of the limitations of any M&E system. Lastly, she stressed on the importance of periodic reviews on the M&E system and on M&E trainings to ensure good quality data.

Mr. Binod Mahanty, Technical Officer, WHO India, on behalf of NACO, presented the seven recording and reporting tools currently used in the ART programme. The registers and forms are:

      Pre ART Screening Register

      ART Enrollment Register

      ART Registration Card

      Patient Care & Treatment Record

      Drug Dispensing Register

      Drug Stock Register

      Monthly Reporting Form.

He also provided a background on national, state and health facility level issues and indicators to measure progress at each level. He further showed examples of current ART reports, including a cohort analysis. He also presented some of the proposed changes in the tolls that need to be discussed in the group work.

Dr. Rajasekaran, Superintendent, GHTM Tambaram, Chennai, presented an overview of an computerized MIS for ART established at GHTM with support from CDC. He outlined the various types of patient information which can be entered into the system and including demographic and medical details and he demonstrated the specific ARV component which includes ARV screening, registration, examination, patient details. In his presentation he demonstrated the application of ARV related information in the system by providing maps of district wide distribution of ART patients at GHTM and information on concordant and discordant couples. He also demonstrated that a computerized system also allows multiple data and linkages of information sources for example VCTC and ART centers.

The discussions focused on the issue of paper based versus computerized information systems. It was agreed upon that in most places a mixed system is required where the source information is collected on paper and entered into a computer for reporting and analysis. The slogan was “start simple and upgrade”.

Many representatives from ART centers felt that it is important to collect information on pre ART care of PLHA (as outlined in the Pre-ART Screening Register). The inclusion criteria may include HIV+ status and AIDS related symptoms. It was proposed by Dr N.S. Dharmashaktu, Addl. Project Director, NACO to have Pre-ART Screening Registers at CHC and PHC level which should be linked to the ART centers for referrals.

The participants were then divided into four working groups with specific Terms of Reference (ToR) (see Annexure II). The participants discussed the existing M&E tools and proposed changes in their groups and presented their findings. The existing M&E tools are: 1- Pre ART Screening Register, 2- ART Enrollment Register, 3- ART Registration Card, 4- Patient Care & Treatment Record, 5- Drug Dispensing Register, 6- Drug Stock Register, 7- Monthly Reporting Form.

It was mentioned that some definitions in the reports and records may require further clarification such as the definition of “cumulative” or the definition of “transferred out”. Determining adherence through pill count / pill dosaging was further discussed. It was suggested to make the patient treatment card more practical and smaller like an ATM card. Inclusion of paediatric information in the M&E tools was also suggested. Other detailed suggestions were provided and captured by the organizers for inclusion in the final recording and reporting tools.

The working group of intersectoral and private partners highlighted the fact that the recording tools had not been used by them earlier but they showed interest in using shorter versions of the tools for their own M&E and for reporting to NACO on a quarterly basis.

Partners Session (Day 2)

Representative from a total of 14 Intersectoral partners, private hospitals, NGOs and Kerala SACS (currently not under the NACO ART programme) presented their experience with provision of ART in their respective programmes.

All organizations presented an update of their experience with ART, provided information on side effects of treatment. All organizations indicated that they by and large followed the NACO ART guidelines except in cases where patients were started before the National Programme was launched. The areas discussed by the participants included the issue of non naive patients (patients who have been exposed to ARVs earlier i.e. through private physicians) the importance of adherence, follow up and treatment preparedness, defaulter tracing, Nevirapine intolerance, second line regimens in the private set-up, lack of resistance testing facilities, treatment side effects and immune reconstitution syndrome (IRS). Most partners did not employ any additional staff specifically for ART. Many partners had negotiated subsidized rates for ARVs for their patients from pharmaceutical companies.

Salient points of the partners’ presentations and discussions are:

      Patients currently on ART from the intersectoral partners should not be transferred into the NACO programme but remain with their respective organizations. A practical and sustainable policy and partnerships has to be evolved for deciding beneficiaries which already have access from their employers.

      ESI, the major intersectoral partner, has a membership of 31 million beneficiaries with the potential to increase coverage and access to ART for PLHA under ESI. Sensitization of all health care workers is necessary.

      Intersectoral partners, NGOs and the private sector should report their ART data to NACO for better understanding of the HIV situation and access to ART and to share progress. Therefore, M&E coordination with all the sectors and donors at the national and state level need to be strengthened. Reporting forms and procedures should be developed that are simple and can be followed by these partners without much burden on the existing setup.

      Structural support to ART centres in highly vulnerable and vulnerable states by providing one ART centre at state head quarters with additional staff for giving leadership in training, M & E and research. Other centres should have support based on workload (ART centres with less than 50 ART patients may not require extra staff).

      The Kerala model (ART financed by the State Government) needs to be studied further which provides coverage through five medical colleges. NACO should fill the gap and provide technical assistance where required to make it an effective ART programme.

      The need for paediatric formulations and second line regimens was raised and NACO was urged to do the needful at the earliest.

      The SACS requested a list of all ARV manufactures for local procurement of ARV drugs. In this respect, the use of drugs approved by National Drug Authority is sufficient (WHO prequalification is not required for domestic use)

      The intersectoral partners requested a sustained technical assistance especially for specific issues such as M&E.

Valedictory Session

Dr. B.B. Rewari, National Consultant (ART), welcomed the dignitaries on the dais, Dr. Anbumani Ramadoss, the Hon’able Minister for Health and Family Welfare, Dr. S.J. Habayeb, WHO Representative to India, Mr. P.K. Hota, Secretary Health and Family Welfare, Dr. S.Y Quraishi, AS&DG NACO, and Dr. N.S. Dharmshaktu, APD NACO.

Dr. N.S. Dharmshaktu, APD, NACO, presented a brief on objectives of the workshop, the proceedings and outcome of the workshop, the salient points raised during the discussion and the final recommendations.

Dr. S.Y. Quraishi, AS & DG, NACO thanked the participants for their contributions and highlighted the importance of the workshop and reiterated that ART is a top priority of NACO while simultaneously not compromising on prevention efforts.

Dr. S.J. Habayeb, WHO representative to India, congratulated NACO for conducting this important workshop. He thanked the participants for their contributions and highlighted WHO’s commitment to support the Government of India in scaling up ART.

Dr. Anbumani Ramadoss, the Hon’able Minister of Health & Family Welfare, emphasized on the need to make free ARVs available to all people who need treatment.  He urged NACO to speed up the ART programme and have 100 ART Centers functional by the end of 2005. He also clarified that the number of 100,000 patients to be treated is based on estimates, but if more people require treatment, ARVs should be provided to all. He further pointed out that the government is considering providing ART through NGOs also. He stressed that the government is committed to strengthening the health system in India and that the health budget has been increased. He thanked the participants for their contributions and WHO for the support to the workshop.

Dr. Khera, JD (Trg.) ended the workshop with a vote of thanks.

The main recommendations of the workshop are:

      Following the “3 ones” principle all the partners in ART provision should work together, tools should be harmonized and a multi-sectoral M&E working group (task force) should be formed. There should be one unified M&E system for the country.

      About 5-10% of the programme budget should be spent on M& E activities.

      Recording & reporting is presently paper based, but should gradually be shifted to computerized system.

      The reporting system should help in monitoring care at the ART center, help in taking timely action at state level, and support policy decision at national level. The flow of information should follow a pyramidal system where more information is required at the ART center to monitor implementation and only selected indicators are required at national level to monitor achievements of the national programme.

      The reporting system should be simple, flexible and adaptable, based on essential indicators.

      Two essential indicators are monitored internationally through the United Nations: 1) Coverage (% of Population receiving ART) and 2)  Access (Number of facilities providing ART).

      A Pre ART Register should be kept in all district hospitals where OIs are treated. Clear guidelines and forms should be developed for district hospitals / private physicians for ART patient referral.

      The ART Registration Card (which is retained by the patient) should be small, simple, handy, should indicate general information & date for follow up.

      Simplified reporting formats should be designed for NGOs / Intersectoral partners for quarterly reports to SACS & NACO.

Annexure:

Annexure I: Agenda

Workshop Objectives:

      To review the existing M&E tools in relation to ART

      To discuss components of a computerized ART information system

      To apprise and involve intersectoral partners, the private sector and NGOs on the National ART programme and M&E tools 

Annexure II: Terms of Reference of Working Groups

Each participant has a set of all forms and registers in their bags which are the basis for the group work. In addition, each group has one set of the main records and reports with the changes highlighted for easy reference.

The group’s mandate is to discuss the changes, add or delete indicators based on first hand experience from the ART Centers.

Each group has a core list of 3-4 forms and registers to discuss, however, if time permits, they can also discuss the remaining forms and registers.

The expected outcomes are recommendations for modifications of the forms and registers.

Group 1:

      Pre-ART Screening Register

      ART Enrollment Register

      Patient Care and Treatment Record

      Monthly Report Form with Definitions

Group 2:

      ART Enrollment Register

      ART Registration Card

      Patient Care and Treatment Record

      Monthly Report Form with Definitions

Group 3:

      Patient Care and Treatment Record

      Drug Dispensing Register

      Drug Stock Register

      Monthly Report Form with Definitions

Group 4: Intersectoral Partners

      ART Enrollment Register

      Patient Care and Treatment Record

      Monthly Report Form with Definitions

Annexure III: Statewise Distribution of ART Patients in NACO ART Centers, March 2005