Empowered Communities And Accountable Health Systems: Need Of The Hour

Even as we deliberate upon newer strategies for controlling communicable diseases like tuberculosis and non-communicable diseases like diabetes we tend to overlook the tremendous role of an empowered community and a working primary healthcare system in achieving our goal of a healthy society. The recently concluded 43rd Union World Conference On Lung Health re-emphasized the importance of these very pertinent issues. In a country like India, despite well qualified doctors and excellent health policies for its citizens--like the National Rural Health Mission (NRHM) - accessing even basic public health care facilities is a nightmare for most people. Most of an average Indian’s health spending is out of pocket, with the government spending much less on the health of its citizens than they themselves. The malaise of ineptitude pervades everywhere-- whether it is general medical facilities or specialized programmes like maternal/child health, and TB control.

For any meaningful development, the primary healthcare services in India need to be made more accountable in their day to day working.  Although we have a wonderful DOTS strategy in place, it has not been utilized to its fullest potential by India’s pluralistic health set up comprising a small under-performing public sector and a large uncontrolled private sector. Dr Nevin Wilson, Regional Director of the South-East Asia Office of International Union Against Tuberculosis and Lung Disease (The Union), rues that one out of every 8 patients notified by Revised National TB Control Programme (RNTCP) is still diagnosed in a medical college rather than a primary health centre. He says that, “There are several reasons which make a patient go to a tertiary centre for diagnosis of a simple disease like TB. The average daily wage earner does not seek health care till that cough stops him/her from working. And then the aim is to stop coughing and going back to work without understanding the implications of the disease. So it becomes important for health services to support the patients by at least being respectful to them and explaining to them how to deal with their health problems. It is high time also, that the healthcare providers start seeing and recognizing TB. Right now patients who are coughing for a long time are often not even suspected to have TB when they visit a healthcare provider. Usually it takes about one to two months before they come to a DOTS centre and all this while they transmit the disease to others and also become sicker. So it is a matter of accountability. Right now our public healthcare system (right from the primary health centres to tertiary care centres) is not accountable to the communities it serves. This is a big challenge.”

Dr Anil Kapur, President of the World Diabetes Foundation, also agrees that primary healthcare in India is disorganized—health workers are poorly trained, overburdened, ill equipped and under resourced—and there is no accountability. He warns that, “It is about time that the central and state governments in India prioritize health of the country and start spending more on basic health services. An unhealthy nation will be an unproductive nation and all the gains of the last 2 or 3 decades in terms of the economic development will be completely wiped out if we do not take action on building good quality care and services at the primary health care level. There has been an effort through the National Rural Health Mission scheme and we need to push that agenda even further and make it stronger. Prioritizing maternal health and vaccination programmes for children, targeting infectious diseases like TB in terms of service delivery, and dealing with chronic diseases like diabetes and hypertension are fundamental to preventing a future health crisis. All these and other problems (like cancers, HIV, malaria) will only get solved when the government starts to tackle primary health care by developing capacity and making people answerable.”

Shobha Shukla - CNS (left) and 
Carol Nyirenda (right)

Community awareness and participation can go a long way in help making health systems more accountable by demanding better services. Carol Nyirenda, the TB HIV activist from Zambia, who was one of the over 30 community representatives at the conference, feels that no amount of TB control will work without the active engagement of the affected community. Members of the community will have to be empowered and take ownership of the TB programme. According to her, “Any policy and structure cannot be complete without community inputs and voices. For this, we have to de- stigmatize TB and empower TB patients by giving them enough basic knowledge about the disease from a public health point of view. TB has remained with doctors and scientists for too long. Unless the TB patients and community are informed in simple language about TB there can be no meaningful TB activism. In HIV, even persons like me from the affected community, with no medical background, have a basic understanding about the clinical aspects of HIV as it has been explained to me in simple terms. This makes it easier for me to argue with other stakeholders across the table to demand better facilities for my community. Unfortunately, this has not happened in TB and TB patients are not empowered with enough medical information about the disease. They do not even know the names of the drugs they have to eat, they do not know why they have to take them without a break and complete the treatment even though they may start feeling better after sometime. This dis-connect has to break down. There has to be simplification of messages which convey all information about TB. The process has already begun, although slowly. If TB patients realize the gravity of the situation and know that TB can kill and devastate, they will start advocating for their right to access treatment and better drugs. Sickness should not come in the way of becoming an advocate; rather it could be a result of it. In Africa we find more concrete action on TB activism. We have very few activists from India and there should be many more. We need to build a good cadre of informed and trained community advocates.”

Dr Wilson also would like the local population and community to be empowered enough to question the public healthcare provider for laxity in services—non- functioning laboratories, non- availability/absence of staff, shortage of drugs, irresponsible behaviour of health workers. He feels that right now the system puts a barrier on the community in being able to demand what is rightfully and legally theirs-- patients cannot question the doctor for not arriving at the clinic on time, although it is their right that the doctor is available during working hours and listens to them and treats them with respect. Dr Wilson avers that, “It is the people from the community who will have to be the game changers. We have to help people to become empowered and the process has begun through projects like Axshaya. Mass media can also help in improving awareness about TB and other diseases by informing people through television ads and jingles. All this will immediately have a positive effect.”

Dr Kapur too believes in utilizing the untapped potential of community health workers by giving them good training, the right information, proper equipment and enough resources. He rues that, “We are talking of giving the Akash computer tablets free to school children in India, but if the same resources were used for community health workers, it would be a tremendous asset in terms of the ability to provide interactive education and to record/transfer data and information. It is also about community and people mobilization to understand the role of good governance.”

Let us remember that providing basic health services to the people is not an obligation but a duty on part of the government, and it is the right of people to get it. Communities will have to demand that healthcare systems become accountable to the people for whom they have been created and governments will have to ensure that public policies are implemented honestly at the grassroots level.

 Shobha Shukla - CNS

(The author is the Managing Editor of Citizen News Service (CNS). She is currently providing on-site news coverage from 43rd Union World Conference on Lung Health, with kind support from the Lilly MDR TB Partnership and Global Alliance for TB Drug Development (TB Alliance). She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training in Singapore, has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also authored a book on childhood TB (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org) 

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