Decision-making by governments involves co-opting all stakeholders to ensure that the target group benefits the most. While it is the executive’s prerogative to make policy decisions, and the legislature’s to make laws, the judiciary steps in in case of disputes. The requirement to co-opt stakeholders makes decision-making a consultative process. Various stakeholders play a crucial role in the policy-making process, including think tanks, research bodies, civil society, media, and, notably, the affected parties. The rationale behind adopting such an approach is that decision-makers cannot be experts in every subject or issue they encounter. They may also not be cognisant of the needs and challenges faced at the ground level. For example, in healthcare, when faced with the necessity of formulating a national policy on a disease like thalassemia, decision-makers need to seek the expertise of individuals knowledgeable about the subject as well as patients who are going to be impacted the most once the policy is implemented.
Across the world, the consultative process is the norm. However, the reality of the end product of decision-making in healthcare is often different. Numerous decisions influencing patient care are frequently crafted at the policy level, often by policymakers/bureaucrats who may lack clinical experience. When decision-makers overlook the patient’s perspective, care runs the risk of becoming impersonal, mechanised, and less effective. When it comes to thalassemia, it may seem evident that individuals affected by the condition (or their parents, caregivers) would possess firsthand knowledge of the disorder, and would have a major impact on decision-making. However, there is still considerable progress yet to be made in enabling active participation by thalassemia patients in the decision-making process.
Despite impressive progress in medical sciences and treatments, India continues to have a huge burden of thalassemia with more than 10,000 new cases reported every year. Every eighth thalassemia patient in the world lives in India. To enhance patient care, it is essential to establish laws and regulations that prioritise patient input. By actively involving patients in the policymaking process, we can fortify the healthcare system, tailor it to individual needs, and ensure more efficient care for everyone as we progress. The challenges arise when decisions about health are made not collaboratively between patients and their providers but by individuals overly focused on cost, often neglecting the impact on patients. Basic standards of safety, effectiveness, and compassion can be compromised amid bureaucratic obstacles.
Patient advocacy groups (PAGs) have now emerged as a powerful medium to highlight the interests of patients, including those suffering from thalassemia. PAGs serve as a platform to amplify patients’ voices in clinical research. They actively engage with decision-makers, through private meetings, consultative forums, live events, task forces, and projects, playing a crucial role in fostering meaningful connections with those who influence health care decisions. PAGs undeniably wield significant influence in shaping public opinion and policies. Over the years, they have played and continue to play a pivotal role in shaping political and social systems. Thalassemia Patient Advocacy Groups (TPAGs), in particular, have gained recognition for their substantial contributions to enhancing healthcare services for thalassemia patients across various countries. Despite these achievements, there remains a pressing need for continued efforts to ensure equitable access to quality services for all thalassemia patients worldwide.
For a long time now, patients have been at the lowest rung of the health care ladder and wielded little power. Many of them want to engage with their physicians, therapists, and other providers to optimise their quality of care without outside decision-makers interfering in that relationship.
They should have that right. Things are beginning to change as Patient safety representatives are shepherding more and more patients demanding that their voices be heard for decisions on treatments and access to them, research, approval, and coverage. While involving patients in the process of decision-making is not a magic wand that will solve all problems overnight, it will eventually pave the way for changes that align with the principles of shared decision-making involving patients and their providers.
Thalassemia has been designated a benchmark disability in India according to the Rights of Persons with Disabilities (RPWD) Act of 2016. The heightened susceptibility to Transfusion Transmitted Infections (TTI) places individuals with thalassemia at a considerable disadvantage. India’s first Thalassemia Patients Advocacy Group (TPAG), was launched in 2017. It seeks to leverage the collective voice of empowered groups of thalassemia patients and experts across the country to engage with the four pillars of democracy, and the private sector as well to push for the prevention of rare diseases like thalassemia through screening, particularly of pregnant women, free and uniform management and care of the disease, new treatment therapies, and wellness and inclusion covering psychological and social health, financial health, mental health, and prevention of discrimination. It was actively involved with the government in shaping the National Thalassemia Policy of 2018. This significant initiative serves as a strong foundation, providing ample encouragement for individuals with thalassemia worldwide to come together, actively participate, and collaborate in the decision-making process that profoundly affects them. The interest of patients must come first.
This article is authored by Anubha Taneja, member-secretary, Thalassemia Patients Advocacy Group, New Delhi.