Capacity Building of Patient Groups in Developing Countries: The Right Move for Pharma Entering Emerging Markets
Though patient advocacy group development and function in emerging markets mirrors that of the United States and Europe, there are a number of pitfalls that require special consideration from pharmaceutical companies entering these regions.
The evolution of patient advocacy starts with a small group of advocates focusing on spreading community awareness, education and information to patients, caregivers and the public. As the group grows and matures, it transitions into helping patients navigate the health system in order to access care and treatment -the group soon becomes the expert on how the system serves its constituents and the barriers to equitable access of treatment. With this expertise, groups then start to focus their efforts on promoting change at the clinical and national policy level.
In developing countries, the patient groups are often very small and have limited capacity. This leads to the temptation to artificially accelerate the natural progression and growth of the group. These groups may rush toward taking on a policy advocacy role, while still unequipped, lacking the resources, skills or knowledge needed to effectively execute such a mandate.
I often advise my pharmaceutical clients to “follow the patient group” rather than “lead it.” A company must meet the patient group where it stands in their development and their expertise. Companies cannot expect these groups to be in the same evolutionary phase as their US or Western European counterparts, nor can they rush them to become so. By pushing groups into a policy advocacy role too quickly, the organization is in danger of being perceived as a pawn for the pharmaceutical industry and not as an honest broker for patients.
Another common misconception is the expectation that all patient groups will eventually transition into policy advocacy groups. Many groups see the extent of their mission as providing information and support to patients and their families. These groups are perfectly content in this space, and perhaps best serve patients by remaining in this role. The evolution of a patient group is an organic process that cannot be forced by outside interests.
In order to help organizations move smoothly through the evolution from patient support to policy focus, pharmaceutical companies can assist in several ways. Industry can help patient groups by diversifying their funding base, by becoming more transparent, and by successfully engaging patients in their protocol development in order to effectively reflect the true needs of its clients.
Patient groups in low and middle income countries often lack institutional capabilities, causing policymakers, the media or the medical community to not recognize these groups as representative brokers for patients. Training, staffing and other support from pharmaceutical companies to these organizations, even in areas that may not necessarily reflect the business interests of the corporation, will strengthen patient group capabilities helping them become more effective. Both the organizations and the pharmaceutical industry will reap benefits in the long run from this type of partnership.
Pharmaceutical companies are well advised to make investments in capacity-building in organizations that have an engaged patient population; that are being led by inspirational leaders; and who have a true interest in making a change on a national level. Let’s stop trying to make these patient groups what we want them to be and spend more efforts supporting those who want to assist patients through meaningful policy change.
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