The Voice of the Patient in Latin America

São Paulo. Brazil—17 September 2017—The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) held its second plenary session, The Voice of the Patient, at its 6th Latin America Conference today focusing on how countries in the region can better incorporate the patient voice in the health care decision-making process.

Many organizations are seeking to better incorporate the perspective of patients in health care. A number of patient advocacy groups have helped to amplify patient input, however the “patient voice” is often not prominent in the dialogue where providers, payers, government agencies, and manufacturers dominate the policy-making discussion in Latin America. This plenary explored the challenges and opportunities of more effectively bringing the patient perspective into health care decision making in the region.

The session was moderated by Federico Augustovski, MD, MSc, PhD, Director, Health Technology Assessment and Health Economics Department of the Institute for Clinical Effectiveness and Health Policy (IECS-CONICET), Buenos Aires, Argentina. Speakers included Eleanor Perfetto, RPh, PhD, MS, Senior Vice President, Strategic Initiatives, National Health Council, Washington, DC, USA; Migdalia Denis, MA, President, Pulmonary Hypertension Society for Latin America, Board Member of International Alliance of Patient Organizations (IAPO), Miami, FL, USA; and Aline Silveira Silva, MS, Technologist at Executive Secretariat, National Committee for Health Technology Incorporation–CONITEC, Brasilia, Brazil.

Moderator, Federico Augustovski, MD, MSc, PhD, opened the plenary with a review of the evolving role of patients in health care decision making; suggesting that patient engagement was more of a revolution than simple reform. He also provided international context for the organizations involved in and efforts toward patient engagement.

Eleanor Perfetto, RPh, PhD, MS offered an in-depth perspective on what constitutes the patient voice and patient engagement. She stressed that meaningful patient engagement is a bidirectional relationship between patients and stakeholders and include the following characteristics: reciprocal, co-learning, co-development, partnership, trust, transparency, honesty, and respect.

Migdalia Denis, MA, who in addition to her professional roles is also a person with pulmonary hypertension, focused her discussion at the individual patient level. She defined active patients as being motivated, well informed, well supported, and able to trust the support they receive. Ms. Denis noted that engaged patients are more committed to their health care, more involved in treatment selection, and more compliant with their treatment regimens.

Aline Silveira Silva, MS is a CONITEC Technologist as well as a breast cancer survivor. She described the structure and role of CONITEC, instituted in 2011 as the federal health technology assessment institution in Brazil. Ms. Silva provided an overview of CONITEC’s efforts since 2014 to encourage patient involvement in the commission’s process, including public consultations on draft treatment recommendations and patient surveys to gather input related to its clinical protocols and therapeutic guidelines.

A consistent theme emerged throughout the plenary—speakers agreed that greater patient involvement in the health care decision making process is needed, while acknowledging that much progress has been made in recent years.

Additional information on the ISPOR 6th Latin America Conference can be found here. Released presentations from the conference can be found here. Interested parties can follow news at ISPOR’s press site and on social media using the conference hashtag #ISPORSaoPaulo.

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