Lay reporting

1. DR. RAGHAVENDRA HUCHCHANNAVAR Junior Resident, Deptt . of Community Medicine, PGIMS, Rohtak LAY REPORTING

2. CONTENTS Definition Time-line Feasibility and utility of lay reporting The Caveats Improvement and expansion of lay reporting Verbal autopsy Mortality reporting in India Community based MDR Morbidity reporting Recent developments

3. DEFINITION Lay report: The information provided (by a lay reporter) to monitor the health situation in the community and to plan and manage the health activities. Lay reporter: A person of sufficient maturity and intelligence to operate a lay report and in a position to become aware of illness and death occurring within his/her sphere of influence . He/she can be a local government official, a health worker, a school teacher, community worker, social worker or a house-wife with the appropriate education . While selecting the reporting personnel, one should take into their official status in the community and responsibility in respect for defined portions of the geographical area. Lay reporting system: Is a set of procedures for collecting, processing, summarizing, analyzing and utilizing the data being gathered by the lay or paramedical personnel.

4. TIME-LINE 1956: L ay reporting was for the first time proposed as a WHO objective, mainly to aid for reporting morbidity and mortality. 1971: A consultation held, which considered problems inherent in using the International Classification of Diseases ( ICD ) as a base for lay reporting of diseases. 1973: Another consultation for development of the symptom and disease classification lists , particularly in relation to the lay reporting of maternal and infant deaths.

5. TIME-LINE 1975: A working party of the International Conference on the 9 th revision of ICD, recommended WHO : Become increasingly involved in the attempts made by the various developing countries for collection of morbidity and mortality statistics through lay or paramedical personnel; Organize meetings at regional level for facilitating exchange of experiences between the countries currently facing this problem so as to design suitable classification lists with due consideration to national differences in terminology; Assist countries in their endeavour to establish or expand the system of collection of morbidity and mortality data through lay or paramedical personnel.

6. TIME-LINE 1976: The South-East Asia Regional Office of WHO called for a working group on lay reporting Here a detailed list, based on symptom associations, was devised with the aim that it would be useful for primary health care personnel in all parts of the world. From that detailed list, two short lists were derived: one for causes of death and the other for reasons for contact with primary health care services. 1977: Field trials of a pilot nature were carried out in Burma, India, Maldives, Sri Lanka, Thailand as well as in several areas of the Western Pacific Region.

7. TIME-LINE The results from these trials demonstrated that The I nternational lists, when adapted to suit local and regional needs, can be used to supply crude diagnostic data on death - or medical services in areas where previously little or no information was available. The quality of such data is obviously directly related to the level of ability of the personnel involved with the responsibility for operating the primary health care scheme at its lowest level. The experiment should involve larger areas in the country or self-contained segment of the health care system - headed by an official who is responsible for decision making at that segment and could, after analysing the information, transmit it to the next higher level.

8. TIME-LINE From the data provided, together with a complement of information concerning their quality, the person with administrative responsibility for the management of the primary health care system should be able to obtain a reasonable picture about: Incidence of cases and their variations Relationship between cases and treatment (drug consumption) Uses of health services in general Management of emergencies and Handling of referrals. The administrator should be able to consider priorities in the management of health care and prevention in the area under his supervision and advice on short and long-term policies.

9. TIME-LINE 1978: Lay Reporting of Health Information booklet was published, by WHO. The list was revised and published in a form in which they could be readily adapted to suit the individual needs of countries. 1979: The Lay Reporting System was considered at an All-India Workshop on Health Statistical Standards conducted in December. The consensus was drawn that this tool be used for collecting data on morbidity and mortality.

10. TIME-LINE 1980: Meeting on Lay Reporting of Health Information held in the Regional Office for South-East Asia Region, New Delhi. The objectives of the meeting were: To assess the lay reporting system as it now operates in the countries of the Region and the use being made of it by decision makers, particularly those involved in the primary health care. To examine the potential range of health information which can be collected at the peripheral level by the lay reporters having regard to the difficulties of collecting and processing data at this level. To suggest how the lay reporting system can be improved so as to achieve a more effective monitoring and evaluation of the primary health care at the peripheral level

11. TIME-LINE Recommendations in the meeting: The lay reporting system be developed to cover the reporting of primary health care activities by lay persons, including not only morbidity and mortality but also information required to monitor and evaluate the primary health care programme within the community. Countries developing lay reporting system continue to do so and those currently not actively developing to do so at the earliest. Countries to provide realistic national support to lay reporting in view of the potential benefits to the national interests in promoting the health of the people.

12. TIME-LINE Evaluation of primary health care activities ultimately must be the responsibility of the community leader. The government can assist with the development of an appropriate system but it is the community who will assess the success of the primary health care programme. The lay reporters may best be employed within small communities in collecting data on causes of mortality. The lay reporting system be designed to meet the specific local needs and must cover data collection, processing, summarization, interpretation and presentation of results. In addition, it is desirable that the system contains some mechanism for assessing the quality of the data being gathered and processed.

13. TIME-LINE Emphasis must be on simplicity and on the potential usefulness of the information to the primary health care worker, the community leaders and the district health officers. Moreover the information must pass into the national health information system and be used for regional and national evaluation purpose. Member countries of the South-East Asia region to use the classification list for Lay Reporting of mortality and morbidity as published by the WHO, making such changes as are necessary to emphasize health problems which are of specific local interest . WHO list for lay reporting of health information be revised periodically jointly by WHO and the member countries in the Region to determine, on the basis of interim experience in lay reporting and primary health care, whether alterations should be made.

14. TIME-LINE Member countries should develop active programmes for the initial and continued training of lay reporters . Special training programmes and techniques will have to be developed, particularly in the use of symptom-association lists, to overcome the problem of the limited educational standard of many of the reporters. Regional Office to continue its role of stimulating the development of lay health reporting within the context of primary health care and compatible with the national health information systems.

15. FEASIBILITY AND UTILITY Under Indian conditions the wide network of PHCs are a convenient means for introducing lay reporting of morbidity and mortality as part of the activities of health services. As a part of the routine activities, it seems feasible to extend the survey to cover the whole countryside. The approach of lay reporting can give only the probable causes of morbidity and mortality. It is not conceived as a substitute for the medical certification of cause of death or the diagnosis given by the treating physician. However, the resultant data can be utilized for health planning.

16. FEASIBILITY AND UTILITY The percentage distribution of the major groups of diseases indicates their relative importance. In major groups important specific diseases can be identified. The data can also be utilized for evaluating the impact of health services over a period of time

17. THE CAVEATS Caveat No. 1: Don't allow uncoordinated requests from sub-agencies of the health bureaucracy to place on the primary health care worker an overload of reporting responsibilities . Caveat No.2 Eliminate the concept and word of "Diagnosis" from lay reporting processes. Diagnosis, in its classic medical sense, is the business of personnel well trained in medical sciences and practice. But for the purposes of reporting, documentation and treatment, primary health care workers should be asked to classify or categorize the conditions they see and treat, particularly upon the basis of symptom-history models.

18. THE CAVEATS Caveat No . 3: Reporting format Design recording and reporting instruments (forms, etc.) according to the general level of education and training of the lay workers expected to use them. Do not use forms originally designed for highly trained professional workers. Reduce form content to the minimum useful numbers of items needed by management.

19. THE CAVEATS Caveat No . 3: Reporting format For example: The SOAP approach which was used (Subjective symptoms, Objective symptoms, Assessment, Plan of Treatment), in its original form, presumed that the user was a fully trained practising physician. The only guides the lay workers had were the medical standing orders for treatment. The result of imposing this system on the lay workers was a disaster as far as case documentation and reporting was concerned. The agency gained no useful information on the categories and there were variety of problems causing workload.

20. THE CAVEATS Caveat No.4: Wherever possible, make the case reporting form identical to, or part of, the case recording form and, when economically possible, make the report a copy of the record , to spare the time used in the documentation process and to provide something useful at the local level. For example, a health agency simultaneously set two different medical care reporting systems in operation. One system required that the health care worker extract the clinical record and place the information on the reporting form. The other system used a duplicating record form which was structured to simplify recording; the original became the local clinical record on the patient, the copy was sent to the data centre as a report. In the first system , which required the server to prepare an additional report, the error and omission rate was high . The reliability of data was also dubious . In the second system , where recording and reporting happened concurrently, the error problems had never been a cause for alarm.

21. THE CAVEATS Caveat No. 5: Make sure that simple, analysed information is routinely provided to the primary health care workers which will assist them in understanding the broader epidemiological and clinical picture of their communities. Provide comparisons with other like communities. This type of feed-back promotes conscious attention to the details of reporting. Caveat No. 6: Make sure that the reporting process services the logistics needs of administration and that the administration uses the output to plan, operate and evaluate health services . Reports that only fill file cabinets are a dead loss to an agency. Caveat No . 7: Let the reporting bring beneficial results to the servers and the utilizers of a system. People tire of a system of reporting if there is no evident return in benefits.

22. THE CAVEATS Caveat No. 8: Do not presume that the data obtained represent , either qualitatively or quantitatively, the actual epidemiological status of the community served. The data represent only the disease experiences of the part of the population which desired care and had access to it. A trained health worker would not be able to maintain a disease index system but should be capable of recording the nature of the symptoms being treated .

23. THE CAVEATS Caveat No. 8: As long as lay persons receive adequate initial and refresher training and technical aids, their work commensurate with the degree of performance expected And as long as they are motivated by good treatment in the system and a sense of social responsibility, there is no basis for doubting the validity of statistics derived from lay reports any more than there is reason to doubt the validity of information from physician reports.

24. IMPROVEMENT AND EXPANSION Improvement and expansion of Lay Reporting System : Each country will have its own particular problems and the system developed will have to be modified to overcome these problems. Factors to be considered are: The degree of community participation : This covers whether the village has its own administrative infrastructure , how extensive and effective it is and its relationship with the district and regional organization. Awareness among the community of their health problems and how far they are willing to take action to overcome these problems.

25. IMPROVEMENT AND EXPANSION The availability of suitable persons for recording information relating to the health of the community. The person could be a local government official, a health worker, a school teacher, or a house-wife with the appropriate education. The type of health services being provided - health activities such as treatments, vaccinations, antenatal and postnatal care, water supply, sanitation, food supplementation and health education, and also the number of people benefiting from the services. The frequency at which the reports are likely to be required . Reports about conditions treated should be at short intervals for epidemiological surveillance but more general information on births, deaths, immunization, water supply, education etc., can be gathered at long intervals of six months or one year.

26. IMPROVEMENT AND EXPANSION Care should be taken that the data are useful . For example, for epidemiological surveillance, it may be sufficient for a doctor at the district level to maintain a graph/chart showing the number of cases of a particular condition treated in the village during the month. If the number exceeds a certain level then this could be taken as a warning signal to arrange for an investigation to be made.

27. VERBAL AUTOPSY The term “verbal autopsy” was first proposed by Arnold Kielman and co-workers in 1983 . Defined as “a procedure to exploit the information provided by the relatives of a deceased person to reconstruct the events and symptoms that preceded the death so as to deduct a medically acceptable cause, or causes, of the death ”. The study of causes of deaths was first presented at a seminar on “New Approaches to the Measurement and Analysis of Mortality” organized in Sienna, Italy, in 1986 by the International Union for the Scientific Study of Population (IUSSP) and published in French as part of the proceedings . The First International Workshop on Verbal Autopsy was organized by the Department of International Health of the Johns Hopkins School of Public Health in March 1989 .

28. VERBAL AUTOPSY 1994 : First workshop focusing on maternal deaths was convened by the London School of Tropical Medicine and Hygiene. Main conclusions were The collection of information to determine cause of death is feasible “where there is no doctor”, provided there are well-trained interviewers. Precisely the term “ probable cause ” suggests that it can be probed. 1999: Verbal autopsy promoted as a part of sample registration of vital events in communities with incomplete statistics.

29. Features of a verbal autopsy method 1. Data Collection Questionnaire format Unstructured (Open method) Structured (Closed method) Combined Interviewer Education Interviewing skills Knowledge of local language and dialect Training Respondent Presence during illness and time of death Recall period Greater than or less than5 years 2. Cause of death assignment a) Cause of death assignment Medical assessment (Physician review ) Diagnostic algorithms or guidelines b) Single or multiple causes of death Validation of findings against a gold standard : Post mortem Hospital record

30. MORTALITY REPORTING IN INDIA Registrar General of India Vital statistics division of the Directorate of Health Services Civil Registration System (CRS) C overs the entire population Sample Registration System (SRS) Covers a representative sample of the urban and rural population

31. MORTALITY REPORTING IN INDIA Cause of death reports originate from lay reporters . The reports reach the State Vital Statistics office through the primary health centre, in case of rural areas, and the municipal health office for urban areas . Tabulation is usually done at the state level but the statistics are published by the RGI . A health worker from the PHC is designated as the field agent who undertakes the primary survey. For each death occurring, the field agent identifies one or more persons having knowledge of the circumstances of death, interviews them and records the symptoms and circumstances of death in Form-7.

32. MORTALITY REPORTING IN INDIA The field agent arrives at a probable cause of death by applying the questionnaire based on symptoms and circumstances recorded. The cause of death thus arrived is reported . The PHC statistician is designated as the recorder of events reported by the field agent . Half-yearly verification of the household list is done by the recorder. Medical officer of the PHC is expected to check and certify the correctness of cause of death assignment by the field agent.

33. MORTALITY REPORTING IN INDIA From January 1999 a cause of death component has been added to the SRS (RGI, 1999). This is called as the SRS-COD component. The SRS part-time enumerator (PTE) records cause of death in column 16 and the code in column 17 of the revised Form-5. A departure from the Survey Cause of Death-Rural form (used previously) in this format is the elimination of the structured questionnaire . In case of the urban areas, a medical certification of cause of death (MCCD) scheme is operational.

34. MORTALITY REPORTING IN INDIA All medically attended deaths are expected to be registered along with cause of death reports in a format which is similar to what is prescribed by the WHO for International Classification of Cause of Death (ICD). The responsibility for reporting cause of death rests with the doctor /health care provider who last attended on the deceased. Reports are sent to the municipal health authorities, who forward them to the concerned state vital statistics office . SRS covers 7597 sample units in India covering a population of 73 lakhs. Haryana – 210 sample units covering a population of 2.15 lakhs.

35. MORTALITY REPORTING IN INDIA Three stages in SRS-COD form: Stage I: To isolate major groups of disease Stage II: Tries to aggregate similar symptoms pertaining to specific diseases in each major group Stage III: Symptoms specific to a particular disease are collected leading to the probable cause of death

36. SRS FORMS Baseline Survey Forms Form 1: House List Form 2: Household Schedule Form 3: Pregnancy Status of Women Continuous Enumeration Forms Form 4: Outcome of Pregnancy recorded by Enumerator ( jan-june;july-dec ) Form 5: Deaths recorded by Enumerator Form 6: Monthly report of Outcome of Pregnancy Form 7: Monthly report of Deaths Compilation Tabulation Forms Form 8: Consolidated monthly report on births and deaths Form 11: Finalized list of Outcome of Pregnancy ( jan-june;july-dec ) Form 12: Finalized list of Deaths ( jan-june;july-dec ) Form 13: Results of HYS for Outcome of Pregnancy ( jan-june;july-dec ) Form 14: Results of HYS for deaths ( jan-june;july-dec )

37. SRS FORMS Half yearly Survey Forms Form 9: Outcome of Pregnancy recorded by Supervisor ( jan-june ; july-dec ) Form 10: Deaths recorded by Supervisor ( jan-june ; july-dec ) Form 15: Distribution of usual resident population by age, sex & marital status Form 16: Distribution of Female population by broad age groups and levels of education (as on 1 st July/1 st January) Form 17: Number of females who got married by age at effective marriage ( jan-june ; july-dec )

38. Base Line Survey (By supervisor with the help of enumerator) Houselist (Form 1) Household schedule (Form 2) List of pregnant women (Form 3) Continuous Enumeration by Part Time Enumerator (PTE) BIRTHS (Form 4) Monthly report (Form 6) DEATHS (Form 5) Monthly report (Form 7) Updating Forms 1,2 & 3 MATCHING Births: Form 4 with Form 9 Deaths: Form 5 with Form 10 BIRTHS (Form 9) DEATHS (Form 10) RE-VERIFICATION (Independently to another supervisor) Transmission of Form 11 to 17 to ORGI Form 11: Finalised list of births Form 12: Finalised list of deaths Form 13: Result of HYS for births Form 14: Result of HYS for deaths Retrospective Survey by supervisor (Half Yearly Survey) Completely matched Partially matched or unmatched Correct birth & death

39. MORTALITY REPORTING IN INDIA Major groups of diseases covered are: Accidents and injuries Child birth and pregnancy Fevers Digestive disorders Disorders of respiratory system Disorders of central nervous system Diseases of circulatory system Other clear symptoms Causes peculiar to infancy Senility and The rest

40. MORTALITY REPORTING IN INDIA Rabies Suicide Toxemia Puerperal Sepsis Typhoid Malaria Cholera Malnutrition Tuberculosis Pneumonia Paralysis Heart disease Measles Tetanus Cancer Diabetes Pre-maturity Cord infection etc. Under each one of the broad groups provision is made to record specific diseases which are important. Such as: Under each major group a ‘non-classifiable’ group is provided

41. MORTALITY REPORTING IN INDIA The medical officer in charge supervises the entire work and trains the staff in the scheme. The cause of death in every case is scrutinized by him. Besides, he himself investigates the cause of death independently for at least one out of every ten of the total deaths, in a month, by personally visiting households and following the questionnaire. In case there is a difference in cause of death by the medical officer and the field agent, the one given by the medical officer is taken as final. It is considered that this independent investigation will not only improve the accuracy of data but also serve as a check on the quality of work.

42. COMMUNITY BASED MDR INFORMATION In case any maternal death takes place, ASHA/AWW telephonically informs BLOCK MO & ANM of the area immediately . ANM ensures that every maternal death in her area is reported to the BLOCK MO immediately telephonically within 24 hrs of its occurrence, and simultaneously she also gives information to the BLOCK MO in report. BLOCK MO informs this maternal death immediately within 24 hours of receipt of information from ASHA/AWW/ANM to the Civil Surgeon .

43. COMMUNITY BASED MDR LINE LISTING OF ALL DEATHS OF WOMEN OF AGE 15‐49 YEARS ASHA/AWW line lists all deaths of women of age 15 to 49 years during the month, irrespective of cause or pregnancy status, and she submits the monthly report to ANM by 5th of the following month. In addition, she informs every such death to the ANM telephonically also within 24 hours of its occurrence. The ANM cross checks every death line listed by ASHA/AWW and submits the final report to the BLOCK MO by 10 th of the following month.

44. COMMUNITY BASED MDR INVESTIGATION BLOCK MO on receipt of information of the maternal death deputes the designated investigation team for Community Based Investigation (Verbal Autopsy ) to be completed within 3 weeks of the death. BLOCK MO discusses and analyses the findings of every maternal death investigated with the Investigation Team, completes the Case Summary Sheet in duplicate for every confirmed maternal death during the month and sends the report to the Civil Surgeon within four weeks of the occurrence of the death while keeping one copy for record .

45. COMMUNITY BASED MDR KEEPING RECORD OF ALL DEATHS OF WOMEN OF AGE 15‐49 YEARS All the deaths of women of age 15‐49 yrs , irrespective of the cause of death or pregnancy status be line listed by the ASHA/AWW every month and submitted by ANMs after cross checking, are serially recorded at PHC by the BLOCK MO in the Community Based MDR Register ( including the confirmed maternal deaths ). PARTICIPATION IN THE MEETING OF DISTRICT MDR COMMITTEE BLOCK MO participates in the monthly review meeting of the District MDR Committee chaired by the Civil Surgeon in the following month .

46. COMMUNITY BASED MDR DISTRICT LEVEL MATERNAL DEATH REVIEW BY CIVIL SURGEON (FBMDR + CBMDR) Civil Surgeon will constitute the District MDR Committee comprising of MO (Obs. & Gynae .), Anaesthetist, Officer I/c blood bank/blood storage centre, a Senior Nurse and invited members from Facilities/Block PHCs as Members, and District Nodal Officer MDR as Member Secretary of the Committee. Monthly review meeting of the District MDR Committee chaired by Civil Surgeon and convened by District Nodal Officer every month on a prefixed date.

47. COMMUNITY BASED MDR MATERNAL DEATH REVIEW BY DISTRICT HEALTH SOCIETY UNDER THE CHAIRMANSHIP OF DEPUTY COMMISSIONER (FBMDR + CBMDR) The review meeting will be attended by all the members of the District Health Society or a selected group of DHS members as deemed fit by the Deputy Commissioner. The other members to attend will be the District MDR Committee members and any other member incorporated/suggested by the DC which may include the family members of the deceased who were present with the mother during the treatment of complications or at the time of death. Monthly review meeting chaired by DC, convened by the Civil Surgeon and assisted by the District Nodal Officer (2 relatives of the deceased to attend ).

48. COMMUNITY BASED MDR STATE LEVEL MATERNAL DEATH REVIEW BY STATE LEVEL TASK FORCE (SLTF). (FBMDR + CBMDR) Review meeting once in 3 months chaired by Principal Secretary Health & Family Welfare ( PSHFW).

49. MORBIDITY REPORTING

50. Table : Countries where verbal autopsy studies have been conducted WHO Region Countries South-East Asia Afghanistan, Bangladesh, India, Nepal, Pakistan, Indonesia Africa Angola, Benin, Cameroon, Egypt, Ethiopia, Gambia, Ghana, Guinea-Bissau, Kenya, Malawi, Namibia, Nigeria, Senegal, South Africa, Sudan, Tanzania, Uganda South America Mexico, Bolivia, Nicaragua Western Pacific region Papua New Guinea Eastern Mediterranean Region Syria, Jordan, Lebanon, Yemen

51. RECENT DEVELOPMENTS Currently, 36 Demographic Surveillance Sites (DSS) in 20 countries, the Sample Registration System (SRS) sites in India, and the Disease Surveillance Points (DSP) in China regularly use VA on a large scale, primarily to assess the causes-of-death structure of a defined population. Despite such a widespread use of verbal autopsy, its difficult to assess how consistent and reliable the data are. Another drawback: unable to replicate procedures used to assign cause of death as verbal autopsy data sets are not widely shared, and it is impossible to independently assess the quality of the assignment.

52. RECENT DEVELOPMENTS WHO has now published (2012) : Verbal autopsy standards: ascertaining and attributing cause of death. The new standards include : Verbal autopsy questionnaires for three age groups (under four weeks; four weeks to 14 years; and 15 years and above ); A cause-of-death list for verbal autopsy prepared according to the ICD-10.

53. SAMPLE OF A DIAGNOSTIC ALGORITHM

54. REFERENCES Lay reporting of health information for Primary health care. SEARO 1980 Setting international standards for verbal autopsy. Available from: www.who.int/bulletin/volumes/85/8/07-043745/en/index.html A Standard Verbal Autopsy Method for Investigating Causes of Death in Infants and Children. World Health Organization Department of Communicable Disease Surveillance and Response. Available from: http:// www.who.int/emc Causes of death in Rural Andhra Pradesh, India , Central Clinical School Faculty of Medicine, University of Sydney June 2006. Framework and standards for country health information systems / Health Metrics Network , World Health Organization. Available from: http :// www.healthmetricsnetwork.org. Guidelines for HMIS Reporting Format. 8th July, 2010 SRS 2012. Available from: http ://www.censusindia.gov.in/vital_statistics/srs/Chap_1_-_2010.pdf

55. REFERENCES SRS flowchart. Available from: http :// www.censusindia.gov.in/vital_statistics/srs/Executive_Summary_2010.pdf Status of Mortality Statistics Reporting in India A Report March 2007. Central Bureau of Health Intelligence (CBHI). Available from: www.cbhidghs.nic.in Lay reporting of health information. Geneva: World Health Organization; 1978 Beyond the numbers: reviewing maternal deaths and complications to make pregnancy safer. Geneva: World Health Organization; 2004 . World Health Organization. International Statistical Classification of Diseases and Related Health Problems (ICD ). 10th Revision, Second Edition. Geneva, World Health Organization, 2005 . Available from: http :// www.who.int/classifications/icd/en/ Applying ICD-10 to Verbal Autopsy . Available from: 9789241547215_part3_eng.pdf

56. THANK YOU