Digital Diary Tool Under Health Account Assessment For Community Participation And Action: An Implementation Experience From Rural, Urban And Tribal Field Sites In India

Introduction

As per WHO Declaration of Alma Ata, 1978,[1] “The people have the right and duty to participate individually and collectively in the planning and implementation of their health care”. Until need is assessed from user’s perspectives, the delivery of health services to the community can’t improve. [2–4] In other words preventive as well as curative and rehabilitative health care cannot be improved until mechanism of user’s feedback is inbuilt.[5–6] If service providers get authentic timely feedback and action is modified based on that feedback, then implementation of various programs on health care may be done more effectively.[7]

India possesses 2.4% of world’s area and caters to 17% of world’s population with diversity at every few hundred kilometers; hence for any health program, there are mostly local and area-specific challenges at the ground level for implementation. Current Indian Health Management Information System (HMIS) [10–11] works without the involvement of the community. There is no mechanism to verify the authenticity of the HMIS data and its use at grass root level.[8] Many efforts in this direction like Maternal Child Tracking Systems -MCTS found nearly 18% of the clients reported receiving short message service (SMS) and only 6% could understand the SMS.[9] Therefore, culturally appropriate tools are required which may be different in different locations. Lack of appropriate training, overburdened data entry operator (DEO) and auxiliary nurse midwife (ANM), poor Internet connectivity, slow server speed, frequent power failures are major limitations reported in MCTS and schemes like that.[10] HMIS can be considered useful if the specific patient to whom the specific health information is attributed can be traced back and specific service/ solution may be provided to “that” patient.[13–14] In view of situations of uncertainty [8] in data completeness, community participation and abysmal use of local information at local level to improve on situation, there is a need for a mechanism to strengthen health data and hence, service delivery, therefore, Health Account Scheme-(HAS) has been conceived at Indian Council of Medical Research (ICMR) and put to field testing.[15] As, “HAS” has not been systematically evaluated since, it’s roll out, this is first report on the observations made during its evaluation.

In HAS intervention, study site population been given individual health diary to write health status and health needs. Health diaries marked with the unique number on each page of the diary had space to write by self or by health volunteer. Self carbon page of each updated page is torn and collected for monthly update and prepare monthly health scenario report to share (without personal identity) with all stakeholders of that locality to improve on service delivery and health literacy. Such intervention may affect morbidity profile, so that is also explored. Objective of this paper is to document gaps observed in health care delivery in community by health care workers (during filling and updating of health diary) and measures undertaken for bridging them.

Methodology

This qualitative reporting is on the observations made during conduction of HAS module. These observations of gaps identified at field became possible by personal connections builtup during monthly health status updating in HAS. Linkages/ rapport developed between community and health care providers during health diary updating led to emergence of information on gaps existed in the study community which were not previously published.

Sample size: Study site selection was based on response and willingness conveyed by the state authority. Considering average 5 persons in one house, 2500 persons from a block of 500 houses per site, total 7500 persons were the anticipated sample size. The duration of observation was 2013-14 for Hardoi site and 2015-16 for tribal – Doimukh site of Arunachal Pradesh.

Sequence of Intervention undertaken: (Flow Chart 1):

Codal formalities for research funds transfer were completed like Ethical clearance from local institution body, grant of undertaking of responsibility of equipment and staff, mandate form of statuary audit body, bank account details for e-transactions of funds, Staff was appointed at sites. Baseline survey for situation analysis was conducted to gather opinion on HAS intervention. Informed consent forms were filled and if consent granted, application form for individual health diary were filled simultaneously during baseline situation analysis. After distribution of health diaries to those who filled application form, self carbon page of health diary (containing information on health status, treatment and needs) were collected on once a month basis for 12 months.

Most observations have come by conversations done by team HAS comprising of medical officer, data entry operator, social worker who made community connections with local leaders, local Non-Governmental Organizations (NGOs), private practitioners, pharmacists, local health administration, Panchayat members, ANM, ASHA, Anganwadi, Health volunteers and individuals.

When it was observed that scheduled monthly visits of ANM and ASHA or any field worker is not taking place in any of the study areas, the reasons were explored. Lack of time and resources, travel expenses, filling of data sheets was time consuming to supply regular HMIS, were mentioned among some of those reasons.

Since, there was a need to connect on once a month basis under HAS intervention, so a volunteer catering 50 houses was deployed. Teacher, students, housewives, senior citizens who were available and willing to volunteer, were given orientation using ASHA manual for preventive health, helping Health diary filling & carbon page collection. Due to the regular monthly visits, good rapport was established among the community, HAS Team and volunteers that led to the identification of many lacunae/ gaps at ground level in the health care delivery and implementation of the health programs. Online data entry on HAS website could not be analysed due to deficiency in software and internet availability at sites. The baseline, end term and Health Diary data were entered in to the excel sheet and analysed after transporting to SPSS version 20 for comparison of pre-post morbidity profile as per WHO ICD 10 classification. Quantitative changes in morbidity profile during observation period and actions on gaps are reported in qualitative mode. Flow chart for data input shows the sequence in data collection.

Results

The composition and demographical features of health diary holders are given in Table 1. 7484 (98%) accepted Health Diary out of 7637 contacted in study area. Majority of population (81.6% rural, 78.9% urban, 64% tribal sites) was found preferring private doctors. In tribal site (the highest among the three sites) one third populations preferred Government system.

Changes observed in top five major categories of illness at baseline and at end-term after 12 months of Health diary use are given in Table 2.There was 1 to 3% rise in prevalence of morbidities at the end term survey. Significant changes observed in infectious illness in rural site, diabetes in rural and urban, digestive system disorders among tribal site population. The changing dynamics is of point prevalence during months of March-May. Overall improvement in reporting of non communicable illness may be the reason behind its rising prevalence. Previously unknown cases of Hypertension (6%), Diabetes (8%) were detected during study.

Discussion

Participative community handles chronic, acute, emerging and rarely occurring diseases in the better way.[17] That is evident from the shifting paradigm of disease profile in study sites. Health care is about care of human by human. It was visible in our study also when health volunteers and HAS team monthly contacted for health diary updation. Due to this conversation many gaps emerged which were previously not in light but existed in the community. Public faith rejuvenation by making them participate in Government’s schemes is also observed in published literature.[18] The gaps at macro level of policy planning and micro level implementation could be reduced by community participation.[19]

A study in South Africa found that Lay health volunteers in the community were equivalent to those who received treatment through other modes of treatment delivery.[20] Similar utility was observed in our study.

During this study coordination with various departments like District hospital, water, sanitation, health, education, Panchayat was explored with health information sharing for improving the health of community. Not much is published on this but similar efforts have been found effective in other study.[21] According to Tangchar al multisectoral actions for health, defined as actions undertaken by non-health sectors to protect the health of the population, are essential in the context of inter-linkages between all dimensions of sustainable development.[22]

In the initial phase of our study, people in the community doubted intention and utility of scheme. The reason may be the non-availability of help in the time of need, lack of proper implementation of various programs/schemes at ground level and unmet needs without channel to address them. Some other studies like ours could identify such gaps by community involvement and helped restoring people’s confidence in public health system.[23, 24] There are similar success stories of implementation of Pulse polio, Revised National Tuberculosis Control Program (RNTCP) when community became participant,[25] but these are only disease specific programs while our study observed changes (table 2 and 3) in wide variety of health conditions and attributes it to feedback from community and its participation in health information generation.

Though there is not any study with similar approach to set communication with community but few studies show effectiveness of community based health workers in early diagnosis of diseases like cancer.[21]

Conclusions

Due to HAS intervention (community participation to open channels of communication) ensured once a month contact with each one to update health status not only for gathering information but also to take timely actions on identified needs/ gaps as well as generated confidence among community.

This also highlighted the need to improve presence of frontline health workers/ volunteers, intersectoral linkages to pool resources at ground level at all 3 sites. It will further improve if health diaries are made service linked to ensure compliance.

Ethical approvals

Project’s Ethical Committee of ICMR and at sites provided approval to conduct the study.

Conflict of Interest

None

Acknowledgements

Grateful for valuable guidance from late Prof.Dr.DeokiNandan, Dr. V. M. Katoch, Dr.SaumyaSwaminathan and Dr. R. S. Sharma. The study is supported by Indian Council of Medical Research, Task Force Grant number No. 5/7/1/208-RHN, IRIS number 2008-0826,A to C

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