Dissemination of Cancer Survivorship Research: Meeting Summary
2. What are the barriers to dissemination?
- Biomarkers (Lack of): There is a lack of biomarkers for intervention targets among survivors leading to the perception that results are not clinically meaningful.
- Cooperative Groups: There has been resistance among cooperative groups to conduct cancer control studies. It is uncertain whether the recent introduction of NCI’s policy to compensate sites for recruitment to cancer control trials at full parity with more-clinically-oriented trials will increase the number of cancer control trials.
- Cost of Replication Studies: There is a paucity of second generation studies that reassess and revise programs and still fewer third generation studies that examine program dose, duration, and target it to those most in need.
- HIPAA: HIPAA constraints remain an obstacle for accessing survivors.
- Study Designs: Academically based solutions often are predicated upon resources that are not widely available elsewhere, which inhibits adoption of those practices.
- Study Sections: Replication research is very difficult to get funded at NIH. Additionally, although there is limited research that informs our opinion on what works in terms of dissemination, dissemination research is difficult to get funded at NIH. The mindset of study sections is not likely to change.
- Access to Survivors and Intervention Resources: There are few survivor programs; often the mechanisms to offer services are not in place. Additionally, there is a lack of access to materials, methods, or resources proposed for use in community or clinical settings (e.g. non-cancer centers).
- Complex Interventions: Psychosocial interventions often are bundled, and too difficult or demanding to deliver.
- Cost: The costs of interventions may limit the ability of providers to implement programs on a wide-spread basis. Printing, storing, and distributing educational intervention materials can be very expensive and should not be underestimated.
- Reimbursement Constraints: There is no incentive for clinicians to take on responsibilities for which they are not compensated. Note: continuing medical education credits do not work.
- Staff Constraints: There is a shortage of available personnel to implement interventions (e.g. lack of social workers and RNs to deliver interventions).
- Access: People most in need of the intervention often are the ones least likely or able to make use of it.
- Complex Outcomes: In cancer survivorship, people do not typically meet diagnostic criteria for psychiatric disorders. It is difficult to provide evidence for preventive interventions (a standard problem with prevention) and meet standards that have been developed for more clinically disordered groups.
b. Organizational infrastructure/Financial constraints
c. The Population