ISPOR is recognised globally as the leading educational and scientific organisation for health economics and outcomes research (HEOR) and its use in healthcare decisions. The ISPOR Europe 2018 conference took place in Barcelona, Spain from 10-14 November. It featured three thought-provoking plenary sessions and more than 2500 presentations in the form of workshops, issue panels, forums, symposia, and podium and poster presentations on innovative research methods, health policy development using outcomes research, patient preferences, real-world data, and clinical-, economic-, and patient-reported outcomes. Six EUPATI alumni attended the Patient Representatives Roundtable meeting at the ISPOR Europe 2018 conference on 12 November and here are their take home messages.
Mirjami Tran Minh: “This was my first time at an ISPOR conference and I was very impressed by the conference programme and the Patient Representatives Roundtable event. The EUPATI course has opened my eyes to the processes that are affecting access to treatment and I am becoming obsessed by health economics. I consider it extremely important that the patient voice is being heard throughout the health technology assessment (HTA) process. Patients and advocates need more education and in-depth knowledge on health economics to navigate in the system and vice-versa: it is crucial that we bring our insights, patient realities and voice in the health economic modelling and decision making. The ISPOR Patient Representatives Roundtable is a good way to improve cooperation between stakeholders, but we need more patient involvement, e.g., travel grants for conferences as the ISPOR Patient Representatives Roundtable proposed.”
Joan Jordan: “Attending ISPOR Europe was a great opportunity to stay current on what is happening in the world of health economics. You can find a report and a concise infographic on the top 10 HEOR trends here. It was good to see that universal health coverage, novel therapies, biosimilars, mobile health and accelerated drug approvals made the list. Providing the best possible health outcomes at affordable costs is fundamental to HEOR, so it was not surprising that drug pricing and spending came out on top. I thought that this information would be useful for patients to share with their communities and better understand the HTA landscape. In the future, more patients should attend ISPOR conferences, so collaborations can be formed, and our voice can be heard.”
Dominique Hamerlijnck: “This is the 4th ISPOR conference I have attended as a member of the ISPOR Patient Representatives Roundtable. At every ISPOR conference I find answers to questions I have been asking myself in the past year and come home with more questions and topics I want to explore further. HEOR and HTA are developing rapidly. New research standards, patient relevant and reported outcomes and societal questions require a renewal and update of HEOR and HTA methods while keeping to rigorous validation of the methods used. The ISPOR Patient Representatives Roundtable has identified issues that we want to address in the coming year: an ISPOR strategy for involving patient experts everywhere including national and regional chapters, guidelines for developing disease-specific quality-of-life questionnaires with patients, and training patients experts in using patient-reported outcomes instruments. Patient involvement in HEOR can still be improved, but we are moving forward. The HEOR society is listening to our questions and we work together in developing new answers.”
Paola Kruger: “The ISPOR Patient Representatives Roundtable is an excellent way to focus on patient issues in the field of HTA. I particularly appreciated having a member of DG SANTE explain the European Commission’s proposals for new legislation on HTA and giving us the opportunity to make our comments. At the end of our discussion it was clear that much still needs to be done to actively involve patients in HTA, however, exchanging views and practices among representatives of different countries is very valuable to learn and report back in each country.”
John Paton: “ISPOR is huge! I had no idea before attending the ISPOR Europe 2018 conference for the first time with more than 5000 other participants. The ISPOR Patient Representatives Roundtable and the increased involvement of patients was welcomed by Nancy Devlin, President-elect of ISPOR. She noted that the ISPOR Patient Centered Special Interest Group is working on a definition for ‘patient engagement in research’. Also, there were excellent presentations amongst which Flora Giorgio from the European Commission discussed the proposed new legislation on the key elements of possible EU cooperation framework on HTA , and we agreed that a European definition of a patient expert is needed. We also agreed that early dialogues and the involvement of patients in scientific advice much earlier in the HTA process, has the potential to impact and add value for patients and industry, and that any conflicts of interest and confidentiality issues can be resolved. I am looking forward to raising this with EUPATI UK colleagues and with the Scottish Medicines Consortium.”
It was great to see familiar faces at the conference including Nicola Bedlington, Jan Geissler, Robert McBurney, Derick Mitchell, Ananda Plate, Kate Morgan, Bettina Ryll and Karen Facey. More importantly, it was great to have the opportunity to interact with key healthcare stakeholders from research and academia, payers and HTA bodies, regulatory and government, and health technology producers. We hope that we have conveyed what the ISPOR conference is like, and how ISPOR is embracing patients, not only at the ISPOR Patient Representatives Roundtables, but throughout the organisation.