Greater Focus on the End-Users And Context Are Key

The challenges of translating data into action were the focus of two symposia at the recent Congress in Montreal. The first, chaired by Ross Brownson of Washington University in St. Louis, was entitled “Translating Epidemiologic Research Into Policy: What Are We Learning Across Diverse Topics In Public Health?” It included panelists Robert Hiatt, Vickie Mays, and Olivia Carter-Pokras. The second symposium, chaired by Roger Bernier, editor of The Epidemiology Monitor, was entitled “Epidemiology, Science Policy, and Society—Removing Pump Handles More Effectively When The Facts Don’t Speak For Themselves.” Panelists included Kay Dickersin, Janesse Brewer, Stanley Weiss, and Robert Hiatt who served on both panels.

Joint Fact Finding 

Janesse Brewer from the Keystone Center, a neutral facilitation organization in Keystone Colorado, shared her unique perspective of working side by side with policy makers, scientists, and stakeholders as well as citizens-at-large. Brewer noted that collisions with cultural values, the larger political landscape, and complicated or nuanced science can all contribute to the politicization of science. She offered Joint Fact Finding (JFF) as a promising approach to resolving the gridlock or stalemate that can often block the adoption of good policy informed by evidence. 

JFF requires that those who are affected by a decision be involved in framing the research question(s) and identifying, generating, analyzing, and interpreting the scientific and technical information that will be used to inform a decision or action. Basically, JFF sets the stage for effective problem-solving which is as the heart of policymaking in public health and other sectors.

Consumer Involvement

John Hopkins University’s Kay Dickersin highlighted the importance of four principles--consumer advocacy, information, collaboration, and global activism--in helping to assure data translation into policy. She cited Project LEAD (Leadership, Education, and Advocacy Development) which she has been involved with for many years which provides an intensive four-day science training course for breast cancer activists to help them exert more influence in science decision-making.

A second model where the four principles are implemented is in the Cochrane Consumer Network, a part of the Cochrane Collaboration in which consumers participate in all aspects of the Collaboration’s work. Also, the US Cochrane Center headed by Dickersin has created a Consumers United For Evidence-Based Healthcare that helps to ensure the validity and use of research by involving consumers and insisting that research promote public interest.

Quote From Gibson

The point was made in the symposium on Epidemiology, Science Policy, and Society that a fundamental challenge in the 21^st century is integrating science and democracy since science alone is not sufficient to make public decisions. And both in Patricia Buffler’s keynote address in the opening session of the Congress and in this symposium, Michael Gibbons was quoted from Nature in 1999 saying “…reliable knowledge can only become socially robust if society sees the process of knowledge production as transparent and participative…The old image of science working anonymously will no longer suffice…Rather a reciprocity is required in which not only does the public understand how science works, but , equally science understands how its publics work.”

Knowing Your Population

Other promising approaches to data translation derived from case studies were presented in the symposium chaired by Ross Brownson. This work has been undertaken by the policy committee at the American College of Epidemiology and eight analyses have been published in the Annals of Epidemiology. In this symposium, UCLA’s Vickie Mays described work on HIV in Mexico, stating that “when you are asking that something be taken up by a country, you need to think of the context and not just the facts.” This point was also made by Carter-Pokras who noted that there are many different policy frameworks from which to approach data translation, and that all have utility but the best approach is one based on the context.

Mays strengthened her point by citing the case of South Africa where HIV control and prevention efforts were presented in a different way to get progress after years of delay and inaction. Data were not enough, said Mays, and more was needed. Mays repeatedly emphasized that translating data into action requires both a changing of hearts and minds, and said “HIV has taught us—know your population!”

Public Participation

The importance of greater public participation in research and policy decision making to achieve greater buy-in and the best results was a theme mentioned in both symposia. Panelists argued for users of the data to be brought in at the beginning of the process and to be included at every step along the way. In his remarks, Weiss highlighted the importance of working behind the scenes and with others to get things done. He urged attendees to talk to each other at conferences because it leads to better data. He used his personal experience of working with advocates to get legislation to protect health care workers against HIV. This achievement is something he was unable to do on his own despite the existence of good data, according to Weiss.

Roles of Epidemiologists

In his presentation, Hiatt focused on what are the roles of epidemiologists in getting unbiased findings implemented. They are multiple, and include being able to interact with others in society. However, in what may be seen as a crowded policy highway, Hiatt said epidemiologists should “stay in our lane and do what we do well.” For example, epidemiologists can support translation by explaining results to policy and decision makers and saying why findings are important. Also, epidemiologists can communicate with the media about numbers and risk. In the end, Hiatt argued for epidemiologists to adopt a new perspective, one that comes with the new focus on translation science. Training of epidemiologists will be required, including training in communication to better understand the “receptor sites”, said Hiatt.  This recommendation is another way of stating the importance of knowing the target population for successful translation.