From June to November 2019 and working closely with the local innovative medicines trade associations in Argentina (CAEMe) and Colombia (AFIDRO), the Latin America Patients Academy (LAPA) implemented 5 training workshops for 28 patient organization leaders in Argentina and 34 in Colombia. The regional trade association of the R&D pharmaceutical industry (FIFARMA) sponsored this initiative.
The 62 patient group representatives trained by LAPA in 2019 include a diverse representation of disease areas, including cancer, diabetes, rheumatoid arthritis, psoriasis, and rare diseases, among others. Training certification for each of the patient group leaders was provided based on a rigorous program that included mandatory participation in face-to-face sessions and webinars focused on updated information to enable knowledgeable dialogue among health care stakeholders in each of three subject areas:
- Health Technology Assessment (HTA)
- Research & Development (R&D), and
- Capacity Building and Fundraising
LAPA coordinated the presentation of topics by subject matter experts to help patient group leaders understand the political context surrounding these subject areas through didactic presentations, Q&A sessions, and workgroup brainstorming. LAPA ambassadors (patient advocate leaders who completed certification in 2018) participated also to guide their colleagues in each of the sessions. Eva Maria Ruiz de Castilla, LAPA President and CEO, along with a team of experts, organized and moderated each of the training sessions with the technical and logistics support of CAEMe and AFIDRO.
HTA has continued to grow in importance as a topic in the current political context of health and access to medicines in both Argentina and Colombia. LAPA training on this included the basic modalities of HTA, how definitions of value influence HTA processes and outcomes, HTA decision making, and the important role of patients in the HTA process (or advocating to become recognized officially as an important part of the process).
In the larger context of R&D, LAPA training included a specific focus on how patient-based organizations can improve their capacity to generate and evaluate evidence in their respective disease areas. Such data collection has become critical as a baseline to calculate value (e.g. with patient reported outcomes), for advocacy (e.g. evidence to support policy change/implementation) and can provide greater legitimacy for patient advocates seeking to become expert partners with governments and other stakeholders to improve health and health systems. Access to innovative technologies, including new medicines, increasingly relies on patient-centered information and perspectives in R&D.
Finally, LAPA training in 2019 focused on how patient-based organizations can build and strengthen their capacity by participating in strategic alliances and diversifying and growing their sources of funding to achieve immediate objectives, financial independence, and long-term sustainability. In the end, this is LAPA’s overarching goal, to empower patient advocates to be effective in collaborative, multistakeholder efforts to improve health and better defend the interests of the patients they represent in an independent and credible manner.
Written by: Eva Maria Ruiz de Castilla, LAPA President and CEO.