By Lyle Dennis, Cavarocchi – Ruscio – Dennis Associates, Consultants to AASLD
Several years ago, AASLD expanded its Liver Capitol Hill Day to include patient groups and found that the most successful meetings with members of the House and Senate and their staffs brought the science and the human experience of liver disease together.
At The Liver Meeting® this year, the Association took the next step. Under the leadership of AASLD President Ron Sokol and President-Elect Mike Fried, about 35 representatives of patient advocacy organizations came together with multiple members of the Governing Board for a two-hour long discussion about how the Association can work more closely with patients.
After introductions, Dr. Ray Chung, who co-chaired the Board’s Strategic Plan Committee, reviewed the newest provision in the plan with the groups. That provision is to develop a strategy to engage liver disease patients with the dual aim of informing the work of AASLD and improving health outcomes. Dr. Chung’s presentation was following by Tatjana Reic and Marko Korenjak of the European Liver Patient Association (ELPA) and by Michael Ninburg and Dr. Su Wang of the World Hepatitis Alliance (WHA) speaking about how their organizations coordinate patient and physician interaction in advocacy.
With those presentations setting the stage, the assembled group began a robust discussion of steps that could be taken to improve coordination and outcomes for our efforts. Among the issues raised by the patient advocates were:
- Speeding up the timeline for implementing the full engagement of patient advocacy groups.
- AASLD and patients together need to address treatment gaps that are a problem when primary care physicians do not know how to address abnormal liver tests. Perhaps creating a track for PCPs at The Liver Meeting® would help.
- Working more closely with other membership societies in the PCP space.
- The need for an AASLD membership category specifically for patients.
- The need to expand AASLD’s advocacy to also address state, county and local advocacy needs.
- Consideration of smaller but more frequent visits to Capitol Hill to maintain a higher level of visibility for physicians and patients.
- A greater prioritization on harm reduction efforts.
- Update the literature to make it clear that every patient needs to be treated.
- Intensify advocacy efforts related to rare liver diseases.
- Finding a means to update physicians on the rapidly changing status of prior authorization for care.
After this considerable discussion, there was consensus that the next steps should include:
- Surveying the organizations present to assure we are targeting the right things and including the whole field.
- Creating a smaller working group to develop the survey and consider additional steps.
- Inventory existing resources and opportunities and maximize benefits from them at the earliest possible date.
Expect that you will be seeing more on this integration between physicians and patients in the near future.