Today’s world is spilt into two categories when it comes to healthcare access. On one side there is the talk about access to care for the right patients at the right time and on the other end there is the talk about barriers to access. In the data rich countries, the battle is about cutting costs by demonstrating the benefits of an intervention in the real world, patient stratification and strategic planning of resource utilization. On the other hand, there are geographies that are still reeling under the barriers to be able to get a treatment option to the patient. The primary barrier that needs to be addressed is the awareness at multiple stakeholder levels to be able to counter the other barriers to access. Awareness or the lack of it is primarily due to the lack of locally relevant data at the disposal of the various stakeholders.
The constant voice from the physician community is that the government is not doing enough to help physicians with the necessary policies to be able to identify and manage patients with a particular disease. The policy makers in turn ask for local data that outline the burden of disease. Patients and care givers in such geographies are not organized enough to be able to raise a united voice or form an advocacy group. As aforementioned, the discussions fall into a vicious cycle on lack of data. Look closely and the data is hidden in the form of real world information in various forms like patient case records, physician knowledge and the burden of disease statistics that reveal the mortality statistics.
Figure 1. Barriers to patient access to care
I have been in a room filled with passionate stakeholders pointing fingers at each other for lack of initiative multiple times in my consulting career. One thing that remains in my mind is what one of the Ministers of Health mentioned in one such meeting. She said, “Show us what the disease is doing to our people. Just complaining about our inaction will not take us as a country anywhere. We are ready to cooperate, but some ammunition is needed to be able to draw an intervention strategy!”
These are situations where the need for local policy shaping initiatives with a scientific framework are needed. There needs to be a participatory role for more than the conventional stakeholders for this to happen. Pharma companies, global advocacy groups, patient organizations, the United Nations and their multiple developmental organizations, the World Bank and other funding organizations, the Sustainable Development Goals, all need to come together with the local stakeholders including the patients, care givers, payors, policy makers and the physicians to form evidence-based local policies.
One such initiative of ours was the Hepatitis in Africa – Call for Action project. I will not get into the details of the project and directly jump into the framework for action that was proposed. CA2RE: Collaboration, Awareness, Access, continued Research and Epidemiology. The construct of the framework of action was to build working groups for each of the CA2RE elements and add a layer of the National Task Force on top of it. The National Task Force, formed from the relevant stakeholders, was entitled to lead individual strings of the framework and work on performance-based metrics. The composition of activities under CA2RE would need to be periodically evaluated for achievement or non-achievement of targets and newly set goals. These National Task Forces will need to meet frequently at a regional level and submit progress reports to the international organization.
Based on the situation on the ground, the activities that need to be done to facilitate the right local policy needs are demonstrated in the grid in Figure 2.
Figure 2: Activities based on the maturity of the disease management on the ground
As evident by the grid, though the term Local Policy Shaping seems simple, it is complex and is a factor of multiple environmental factors related to the disease based on the geography and stakeholder maturity. A frequent measurement of achievement of targets and refining them is needed to make the policy scale and be sustainable.