CISCRP Conducts its First PAB in Asia – Best Practices for Conducting PABs Abroad
Since 2011, CISCRP has been collaborating with sponsors on Patient Advisory Board (PAB) meetings to give patients and their caregivers the opportunity to share personal experiences and thoughts on ways to optimize clinical trial designs. While PABs have routinely been used as a patient engagement tool in the US, Canada, and Europe, PABs conducted in Asia are much less common due to various reasons – including language barriers and challenges navigating local ethics committee processes and regulations. In April 2019, EMD Serono and CISCRP held what they believe to be the first-ever Patient Advisory Board meeting in Taipei, Taiwan, and the success of this milestone exemplified CISCRP’s knowledge of the conduct of global patient engagement activities.
To plan and execute a successful global PAB, CISCRP recommends the following best practices:
- Anticipate differences in local regulations and ethics review processes
Each PAB CISCRP conducts undergoes an ethics review as an added layer of oversight, and in the United States, this process is generally fast and straightforward. Yet, identifying an ethics committee in other countries that will conduct a review of a patient advisory board meeting may prove to be a challenge, particularly when they may not be familiar with PABs. As such, CISCRP suggests working alongside a local non-governmental organization (NGO) to help support the submission process.
- Have patient-facing materials translated by an organization based in the country where the PAB will be held
As there may be nuances in the local language, having native speakers translate any patient-facing materials can help to ensure that key messaging sponsors wish to receive feedback on does not get “lost in translation.”
- Be aware of local healthcare dynamics
In countries where patients heavily respect doctors, and due to unfamiliarity with PABs in other regions, engaging a doctor from a local and relevant health NGO to introduce the research activity to prospective patient advisory board members can help establish trust and ensure that the purpose of the PAB is communicated effectively.
- Find a moderator who speaks the native language and has sufficient knowledge of healthcare
This assures that the patients can not only have a deeper conversation about how to improve clinical trials for their condition, but a moderator also helps with communication of meeting logistics with patients before the session. If the project team does not speak the local language, using a simultaneous translator and headsets can make the meeting more engaging for these individuals.
Through CISCRP’s experiences with PABs both domestically and abroad, we have learned that it is critical to not only put together PABs so that sponsors can adapt their clinical trial designs to their population of interests’ needs, but that we must also adapt our own approaches to research so that we can most effectively and conscientiously do our job in a country where we are a guest. Are academics and researchers in the country already familiar with PABs? Are there cultural considerations that we should be aware of as we embark on our mission to ensure that patient voices are heard? These questions and the above best practices can help sponsors strategize a plan to most effectively conduct a PAB in new territory.
If you are interested in conducting a PAB or would like to learn more about other services offered by CISCRP’s Research Services team, please feel free to contact Annick Anderson, our Director of Research Services. She may be reached at AnnickAnderson@ciscrp.org or by phone at 617-725-2750 x400.
Written by Nova Getz, Research Associate