Value & Outcomes Spotlight is an ISPOR publication for the global HEOR community. Value & Outcomes Spotlight provides enhanced content on health policy and methodological issues and independent contributions from the field, as well as the scientific program of ISPOR Annual Meetings/Congresses/Regional Conferences, plus ISPOR news from around the world.
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Value & Outcomes Spotlight
May/June 2018 Vol. 4, No. 3
The “Patient’s Voice in Healthcare” is the theme of this issue, with six articles focusing on three topics: the patient’s voice, patient engagement, and rare diseases. Aspect of these articles include research and product development, research networks, development of orphan drugs, and equity issues in drug pricing in Europe. In particular, the engagement section describes details on ISPOR’s 2017 Patient Representatives Roundtable–North America, where invitees provide the value of patient engagement being hampered by lack of clarity on the concept and lack of consensus on an evaluation structure.
Also in this issue, it is ISPOR President Shelby Reed’s turn in our “Speaks” section, in which she touches on the transformation of the Society, specifically focusing on our Health Policy Science Council, top 10 HEOR trends, and our Women in HEOR initiative. This issues’ “Corner” includes its usual HEOR News and Research Round-Up, as well as ISPOR Asia Pacific 2018 Co-Chairs Takashi Fukuda and Shinya Saito, who provide us a glimpse of this year’s AP conference and what our host city Tokyo has to offer.
Finally, we publish a Q&A with Clark Paramore and Jennifer Helfer, who discuss rare diseases and the impact specifically on patients.
We hope you enjoy this issue of Value & Outcomes Spotlight! As always, we welcome your feedback and encourage you to email us at email@example.com
David Thompson, PhD
Value & Outcomes Spotlight Editor-in-Chief
The patient voice can pave the way for improved drug development by providing unique insights into disease understanding and clinical trial design.
This article describes the protocol for the PREFER’s central work package to be able to answer the main research question: ‘when and how to consider patients’ preferences in the medical product lifecycle.
The goal of this article is to share the findings from the ISPOR 2017 Patient Representatives Roundtable – North America that focused on eliciting the numerous and sometimes discordant definitions of “patient engagement” among various healthcare stakeholders, as well as identifying the distinct ways stakeholders measure “successful patient engagement”.
Members of the MS patient, research and clinical communities share their insight on the path forward for patient engagement in healthcare, including models and frameworks for a more sustainable, networked approach to incorporating the patient “voice” across the healthcare continuum.
This article considers ways that health technology assessment bodies can take into account the voice of patients with rare diseases when granting access to orphan drugs.
There is a perverse impact of external reference pricing (ERP) in orphan drugs access in Europe by comparing orphan drugs affordability in 12 European countries. This is a call for policy change in light of the fact that the EU has been able to put in place the Common Agriculture Policy (EU-CAP) in support of the agriculture sector.