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.
