by José Luis Cárdenas Tomažič 

Adapted from the Spanish column originally published in El Economista on September 9th, 2023 (La participación de los pacientes en la toma de decisiones en salud)

Pointing out that health decision-makers—especially at the government level—are interested in understanding patients’ opinions and perspectives is almost a commonplace across most of the world. At the same time, there has been a very significant increase in how patients organize themselves to advance their agendas through associations or alliances at the national, regional, or global level. The earliest examples date back to the 1950s with oncology patient associations, and to the 1980s with those related to HIV/AIDS.

In this context, it is worth highlighting the International Alliance of Patients’ Organizations (IAPO), which represents patients of all nationalities and across all conditions, with the aim of promoting a patient-centered healthcare model worldwide. This is pursued by strengthening the impact of patient associations through training and capacity building, as well as by advocating for patients’ voices to be heard and to have influence in health policy discussions. Likewise, IAPO seeks to establish cross-sector partnerships and collaboration among public health professionals, policymakers, academics, researchers, and industry representatives.

Now then, in which areas has progress been made and where is further progress needed? What are the challenges involved?

While patients’ voices are being heard more strongly every day in health-related discussions, the area where the most significant progress has arguably been made is their influence in health technology assessment (HTA) processes. HTA is a methodology used to assess the value and impact of a given health technology (such as medicines or medical devices), incorporating clinical, social, ethical, and economic dimensions, with the aim of informing decision-making in healthcare. This is especially relevant for supporting coverage decisions and the development of clinical guidelines.

HTA methodologies are applied within countries’ health systems through various agencies and institutional frameworks, generally operating under common standardized processes, often guided by the recommendations of ISPOR—the leading global professional society for health economics and outcomes research—whose mission is to promote excellence in healthcare decision-making worldwide.

It is increasingly common across countries for patient participation to be incorporated into HTA processes in order to identify preferences, estimate values, and understand unmet medical needs, among other aspects. This is also recommended by ISPOR.

For example, the United Kingdom has included patient participation since 1999; Taiwan and the United States have also made progress in this area. In Latin America, agencies in Brazil, Colombia, and Mexico stand out, albeit with varying levels of intensity and formality.

However, several studies have identified barriers from both the perspective of decision-makers and patient associations. In many cases, although patients formally participate, there is limited willingness to consider their perspective—either because the value they bring to the discussion is not fully understood, or because their input is perceived as potentially lacking objectivity.

Concerns have also been raised about conflicts of interest related to how these associations are funded, as well as questions about their representativeness of the broader patient population. In addition, decision-makers often lack the necessary resources to adequately channel and integrate this participation.

On the other hand, patient associations face the challenge of understanding the complexities inherent in decision-making processes under HTA methodologies, whether in terms of procedures or clinical and economic technicalities. This is compounded by a lack of training in evidence-based medicine concepts. Additionally, there is often insufficient funding for the various activities they must undertake, creating tension regarding potential conflicts of interest.

Despite these challenges, there has been progress in recent decades. To minimize conflicts of interest, notable efforts include the Consensus Framework for Ethical Collaboration signed by the International Alliance of Patients’ Organizations (IAPO), the World Medical Association (WMA), and the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA), among others. Similar initiatives have been observed within the Asia-Pacific Economic Cooperation (APEC) forum through its own consensus frameworks. On the capacity-building front, IAPO’s global Patient Academy stands out, alongside national-level efforts pursuing similar goals.

As can be seen, patients’ voices must—and increasingly are—being heard. This should be the case not only as an ethical imperative, but also because of the valuable contribution patients make to healthcare decision-making. This desirable symbiosis needs to continue evolving on both sides, so that its positive effects can become ever greater.