Care — almost always in TB, is defined as the right diagnosis and treatment. But how do communities, those affected or the final and recipients of care, define good quality care? What does it mean to them? Is it merely a correct diagnosis or treatment or does it go well beyond it?
Advocates and survivors who know the realities of TB and its social, economic and cultural components of care know that comprehensive high-quality care is well beyond diagnosis and treatment alone. High-quality care is a concept that puts lived realities-economic, social, gender and otherwise- and the experiences of patients and survivors at the centre of the definition of care.
This means that care for TB has to consider individual needs — giving treatment is not enough. These needs vary, from economic support to informational needs and gender responsive care to mental health support.
Why is this definition important? This definition of care is critical because it prioritises the individual and not the treatment. It puts people in the decision making capacity to define their care and what they need. In doing so, it puts the affected individual in control of their care, making active choices and making care responsive to individual needs.
What does this mean? Based on personal experiences and interviews, patients define care in multiple ways and for them if it does not correspond to their realities, the care is substandard. For survivors and patients, high-quality care entails care that is affordable, accessible, stigma-free, that understands the economic realities of patients, is dignified, which accounts for gender and mental health issues -- pre-existing and treatment-induced, among other things. Going by this definition, most quality of TB care is substandard.
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What does it say about limitations in our concepts of care?
Most decision makers find this definition of care too broad or exhaustive. Others argue that it will cost too much. But think about it- if the quality of care is assessed based on the parameters identified by patients, health systems can work more effectively towards creating a paradigm of care that is accessible to patients and caters to their needs fully. The impact of such care would be that it improves the quality of life of the patient as well as improves the utilisation of health services. Moreover, it would reduce the economic and social costs of TB.
Care that speaks to the needs and expectations of those affected, must therefore, be defined by experts but also those who receive it. As survivors, we can tell you that high quality care is not limited to diagnosis and treatment. It goes far beyond that.
Strong patient and community-led inputs are important when metrics of quality are being formulated. When these inputs are missing, the programs can neither claim to be representative, nor inclusive of the realities and needs of patients and communities. As such, these programs and metrics become ineffective, and often not beneficial. The approach then remains top-down, and though well intentioned, also uninformed.
As a long-term effect of this, poor quality care is rolled out, and hinders the success of both the health systems, as well as policies, while also negatively impacting care seeking behaviours of the consumers. This, in the long-term, would create poor quality care, and acerbate the health system and its consumers. What also remains limited is the ownership of communities, and thus, their stakes in seeking accountability and intervening in areas where the care paradigm is failing or lapsing.
Current systems of care perpetuate an imbalance of power. Therefore, we need a renewed discussion, where patients and survivors can lead the paradigm shift, and enable the care systems to address the gaps more effectively, and inclusively. The need is to create a paradigm of care that is not just people facing, but also community and people- focussed. By filling in this gap, of missing voices from actual consumers of care, the national program, as well as the private sector can deal with the TB epidemic in a far more comprehensive manner.
The high quality care paradigm aims to address the lacuna in conceptualising quality of care with the objective of helping all stakeholders understand what constitutes a comprehensive approach to quality care. We must remember that high quality care is a right that all patients deserve and not a favour to be done upon them.
(Dr. Saurabh Rane is an XDR TB survivor, currently working as a management consultant in digital health. He is also a fellow with Survivors Against TB (SATB), a collective of survivors, advocates and experts working on TB and related comorbidities. Himanshu Patel, also associated with SATB, is an MDR TB survivor and marathoner, currently pursuing higher education abroad.)
