​“Voice of the Patient” – insights from the MAPS APAC final summit Dec 9th.

The key points made were:

  • Patient needs and diseases are different therefore not all patient groups are the same. They can be NFP with multiple drivers and motivators; and with either salaried or volunteer staff. Their focus can range from research, patient care, and patient advocacy.

  • It’s important to understand the perspective of the different patient groups; understanding their vision and taking the time to appreciate their motivators.

  • Patient groups are motivated by putting the patient first; they know what’s wrong with the system; are credible with government and media and can advocate where industry can’t. As such they make great alliance partners.

  • However they are generally poorly funded, poorly equipped, lack knowledge of the system and can lack confidence.

  • Different groups have different levels of sophistication, and the question raised is how can industry adapt and adjust their internal processes so that they can partner effectively with patient groups.

  • It is the responsibility of established patient groups to reach out to emerging groups and forge alliances in order to share best practice approaches eg fund-raising and governance.

  • There are opportunities for industry to reach out to patient groups in order to explore common interests ie to improve patient outcomes,

  • Real-life stories are very effective in amplifying key messages.

  • The patient voice, experience and need are important components in clinical trial strategy planning.

  • Both patient groups and industry want the same thing – “the best treatments as fast as possible”. This requires transformative rather than transactional initiatives.

  • Ethical engagement focuses on transparency, multi-company projects, multi-stakeholder alliances, and respect for independence.

  • “It is tremendously exciting to be working in the Asia Pacific region because of the opportunities to advance patient-focused initiatives”. An example discussed was involving patients in a ‘Patient Publication Steering Committee’ where participants were involved at the strategic planning stage in the identification, generation and oversight of publications including plain language summaries of trial results.

Thanks to the presenters and panellists: Richard Vines, Ruth Kuguru, Victoria Elegant, Karen Wooley, and Zig Lang