Increasing the use of evidence in health policy: practice and views of policy makers and researchers

Background

Better communication is often suggested as fundamental to increasing the use of research evidence in policy, but little is known about how researchers and policy makers work together or about barriers to exchange. This study explored the views and practice of policy makers and researchers regarding the use of evidence in policy, including: (i) current use of research to inform policy; (ii) dissemination of and access to research findings for policy; (iii) communication and exchange between researchers and policy makers; and (iv) incentives for increasing the use of research in policy.

Methods

Separate but similar interview schedules were developed for policy makers and researchers. Senior policy makers from NSW Health and senior researchers from public health and health service research groups in NSW were invited to participate. Consenting participants were interviewed by an independent research company.

Results

Thirty eight policy makers (79% response rate) and 41 researchers (82% response rate) completed interviews. Policy makers reported rarely using research to inform policy agendas or to evaluate the impact of policy; research was used more commonly to inform policy content. Most researchers reported that their research had informed local policy, mainly by increasing awareness of an issue. Policy makers reported difficulty in accessing useful research syntheses, and only a third of researchers reported developing targeted strategies to inform policy makers of their findings. Both policy makers and researchers wanted more exchange and saw this as important for increasing the use of research evidence in policy; however, both groups reported a high level of involvement by policy makers in research.

Conclusion

Policy makers and researchers recognise the potential of research to contribute to policy and are making significant attempts to integrate research into the policy process. These findings suggest four strategies to assist in increasing the use of research in policy: making research findings more accessible to policy makers; increasing opportunities for interaction between policy makers and researchers; addressing structural barriers such as research receptivity in policy agencies and a lack of incentives for academics to link with policy; and increasing the relevance of research to policy.

     

Implementing neonatal screening for congenital cytomegalovirus: addressing the deafness of policy makers

Congenital cytomegalovirus (CMV) infection is an important public health problem with approximately 7 in 1,000 newborns infected and consequently at risk for hearing impairment. Newborn hearing screening will fail to detect this hearing impairment in approximately half of the cases because late onset hearing loss is frequent. Hearing impairment has profound impact on cognitive and social development of children and their families, determining most of the disease burden of congenital CMV infection. The potential value of newborn screening for congenital CMV is increasingly discussed. To date, many experts acknowledge the benefit of antiviral treatment in the prevention of hearing deterioration in newborns with neurological symptoms, and the benefit of early identification of late-onset hearing impairment by means of extensive audiological follow up of infected infants. These opinions imply that the potential of newborn screening for CMV would lie in the identification of the large proportion of asymptomatic congenitally infected newborns at risk for developing late-onset hearing loss. Experience with postnatal antiviral treatment of symptomatic newborns is encouraging, but has not been studied in asymptomatic congenitally infected newborns. A large-scale study on the safety and effectiveness of combined screening and antiviral therapy for congenital CMV infection is the necessary next step to take and should not be delayed.     

Changing interpretations,stable genes: responsibilities of patients,professionals, and policy makers in the clinical interpretation of complex genetic information

Except in rare mutation-inducing events, the primary sequence of an individual's somatic genome is static; however, the interpretations or risk predictions based on complex genetic tests now being introduced into the marketplace are rapidly changing. The reality of changing interpretations for stable test results creates questions for everyone involved in genetic testing including individuals, clinicians, laboratories, professional organizations, and regulators. Individuals should be aware that their relationship with laboratories providing genetic testing may be different from their relationship with their physician, especially in direct-to-consumer testing. Moreover, individuals may need to take the initiative to revisit their genetic test results periodically. Clinicians will need to learn how to read and interpret the results of complex genetic tests, remember that interpretations change over time, and understand when to refer patients to specialists and ask for second opinions and reinterpretation of genetic information. Testing laboratories should understand that they may be replacing the clinician as the direct contact for patients, and may have responsibility to inform clients of changes in test interpretation. At minimum, laboratories should make clear what their policies are regarding reinterpretation and allow tested individuals to seek outside interpretations of their genetic test results. Professional organizations and regulators have the responsibility to develop guidelines for clinicians, laboratories, and the general public. In the future, the interpretation of genetic tests may be relatively stable; until that time, the changing interpretation of static genetic test results will create an important set of professional and ethical challenges.