Spotlight: Patient Engagement
Welcome to The Evidence Base Spotlight on the ‘Patient Engagement’.
Read selected coverage from The Evidence Base covering expert insights and news on how to enhance the role of the patient in RWE, HTA and decision-making.
For more content on Patient Engagement, click here.
Patients as Stakeholders video series
Eight speakers in answering this critical question, as they share their professional and personal experiences in patient engagement
Covering topics including market access, plain language summaries, supporting clinicians and much more.
From the Patti’s People series
Mark McClellan: How important is the patient perspective in this process?
Mark McClellan (Duke-Margolis Center for Health Policy) discusses the need to routinely capture the patient perspective and PROs.
Jeff Trotter: What have you learned that patients can offer us?
From many years of experience of observational studies, Jeff Trotter talks about how the role of the patient, and they value they can bring, has changed over the years.
Rich Gliklich: We are not really ‘there’, where patients recognize the benefits of RWE. What would ‘there’ be?
Rich Gliklich (OM1) discusses what the impact of AI on patient understanding of RWE.
From our Expert Insights
Taking a patent first approach to patient engagement in health technology assessment: an interview with Thomas Smith
In this interview we speak with Thomas Smith, Life Sciences Public Engagement Specialist, to understand how patients can be involved in the health technology assessment (HTA) process and what is needed to achieve meaningful patient engagement.
Peek Behind the Paper: Global review of the patient engagement and patient experience data landscape in regulatory and health technology assessment
Here we speak with Hayley Chapman (The Synergist/PFMD) to learn about the recent article “Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review” published in the journal Therapeutic Innovation & Regulatory Science.
Peek Behind the Paper: Considerations for the wider implementation of patient-reported outcomes in real-world evidence generation
In this interview we speak with Konrad Maruszczyk (Centre for Patient-Reported Outcome Research, University of Birmingham) to learn about the recent article “Paving the way for patient centricity in real-world evidence (RWE): Qualitative interviews to identify considerations for wider implementation of patient-reported outcomes in RWE generation” published in the journal Heliyon.
Achieving patient-centered, equity-focused health technology assessment with the Innovation and Value Initiative: an interview with Jennifer Bright
We speak with Jennifer Bright about the institute and the work they are doing to achieve patient-centered, equity-focused HTA.
Role of patients in the generation and communication of real-world studies: an interview with Catherine Bottomley
Patients are central to RWE research and stakeholders are increasingly recognizing the vital role of the patient voice in generating this evidence. In this interview we speak with Catherine Bottomley about how patients can partner with companies on all aspects of RWE.
Impact of the Inflation Reduction Act on drug development and patients: an interview with Jason Spangler, Innovation and Value Initiative
As we delve into the impact of the IRA on the landscape of health care in the US, we hear from Jason Spangler (IVI) to understand the potential effect this landmark legislation may have on drug development and patients.
Transferability of real-world evidence methods and patient engagement practices in health technology assessment from Western to Central and Eastern European countries: an interview with Bertalan Németh
Bertalan Németh (Syreon Research Institute) discusses the ‘Transferability and dissemination’ work package from HTx, which has been tasked with understanding the transferability of knowledge and methods gained to Central and Eastern European countries.
Putting the patient at the heart of decentralized clinical trials: an interview with Henrik Vincentz, James Lind Care
Here we speak with Henrik Vincentz, Director and Founder of James Lind Care about patient engagement and the role of the patient voice in DCTs.
The patient voice in ICER value assessments: an interview with Yvette Venable
Yvette Venable discusses how ICER has engaged with patient organizations and incorporated the patient voice in its drug value assessments, and the importance of this.
Using RWE to benefit pricing and patient access: an interview with Ulf Staginnus
In this interview, Ulf Staginnus (Blueprint Medicines) discusses the impact of RWE on pricing and market access, alongside the needs of stakeholders.
Conference coverage
1st GetReal Institute Annual Conference Breakouts: Patient-centered approaches to RWE and decision making
The GetReal Institute held their inaugural conference on 16th March 2023 in Utrecht, The Netherlands with the focus on ‘A European Outlook on Real World Evidence in a Global Context’. In this Breakout session from the conference, moderated by François Houyez (Eurordis), the speakers discussed “Patient-centered approaches to RWE and decision making”.
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