Patient groups - participating in research

Why should patients work with PatientView?

Using patients insights to move the industry forward

“Patients’ health always comes first, and which is why working with patient representatives as equal partners helps us to better understand and speak with one voice regarding the needs of patient communities as well as drive patient-centric innovations across our organization. Your insights and feedback from the PatientView survey truly help us to focus on areas that we can improve on to enable us to become better partners in your future.”
Eva Bretschneider, Head, Patient Partnerships & Stakeholder Engagement, Bayer AG

“Building trust is essential to our partnerships with the communities we serve. PatientView helps us to understand the opinions of those we work alongside and how we can move closer to becoming a trusted partner. We know that we need to listen and learn and walk this journey together.

The insights generated are also critical for patient communities, allowing them to make informed decisions about which companies to collaborate with in order to improve the well-being of their communities.”
Alex Kalomparis, Senior Vice President, Public Affairs, Gilead

“The voice of the patient is the driving force in everything we do at Horizon. PatientView’s study has provided us with valuable information around what is most important to patient groups and how Horizon can most effectively support them.

This study gives us a better understanding of what we are doing well and where we can improve as we work to address the needs of people impacted by rare, autoimmune and severe inflammatory diseases.”
Matt Flesch, Vice President, Communications and Patient Advocacy, Horizon Therapeutics / Amgen

"At Pfizer, our purpose is focused on patients: breakthroughs that change patients’ lives. As Pfizer’s Vice President of Patient Advocacy, my role is to ensure that the patient voice is embedded at the core of everything we do and our colleagues around the world work hand in hand with patients, caregivers, and patient advocacy groups to meet the needs of patients everywhere, every day.

Your participation in the PatientView survey will help us better serve the needs of patients and advance our shared goal of helping our communities live longer, healthier and more productive lives."
Emma Andrews, Vice President Patient Advocacy, Pfizer

Make your voice heard: A platform for patient advocacy

Patient and carers groups, including civil society and non-governmental organisations, play a pivotal and invaluable role in improving patient outcomes and driving meaningful change within healthcare systems and the pharmaceutical industry.

For more than two decades, PatientView has been building and strengthening relationships with patient groups across the globe, to amplify your voice. We do this through three patient group-led initiatives designed to bring the priorities of your community to the attention of pharmaceutical companies and other healthcare stakeholders.

Improve your relations with pharma

Through surveying 2,000+ patient groups, PatientView seeks to bridge the gap between patients and the pharmaceutical industry by understanding what matters most to those most important to them.

PatientView’s Corporate Reputation of Pharma 2024/5: PatientView launched its 14th Corporate Reputation of Pharma survey on December 10, 2024, and it will run until March 18, 2025. With 46 pharmaceutical companies involved, the survey gives patient groups worldwide a platform to share their views on the industry’s performance and reputation in 2024.
Click here to complete the survey
For a patient summary of our 2023/4 survey on the “Corporate Reputation of Pharma, in your language, from the patient perspective” CLICK HERE

Drive pharma’s ESG Initiatives

Effective Environmental, Social and Governance (ESG) policies are of growing importance for the pharma industry.

Every year, PatientView seeks to gain consensus from patient groups on how to help the pharma industry perform better against metrics/standards relevant to patients.

In 2024 700 patient groups responded to the survey. The results will be published in January 2025.

For more about the ESG report CLICK HERE

Get the support you need: Patient groups in healthcare

Help the pharmaceutical industry and other healthcare stakeholders understand you. This year PatientView asked the question: What is the role of patient groups in healthcare systems? The survey ran between May-July 2024.

Our study tracked historic trends, identify strengths and weaknesses of patient groups across different countries and therapy areas, to empower you with data-driven strategies to enhance your impact.

Patients in Action: Tackling the Healthcare Crisis: In 2024, PatientView mapped the patient movement (worldwide, and across therapy areas), looking at the roles that patient groups play in healthcare systems today, and the support these organisations need from other healthcare stakeholders to achieve their goals.

Read more

Why get involved?

Two case studies

Patient group funding during the COVID-19 Pandemic

During the COVID-19 pandemic, many patient groups found themselves unable to deliver on some commitments due widespread restrictions enforced by their governments. This led some in industry to request, for compliance, reimbursement of funds during a time where patient groups were already struggling financially. As a result of PatientView’s 2020 and 2021 surveys, those pharma companies that had implemented such a policy realised that their reputations had fallen significantly, leading the companies in question to introduce new policies to ensure that future patient groups facing unprecedented challenges would not be financially penalised.

Targeted support for patient group social media communications from the pharma industry

When a PatientView study found that mental health patient groups needed help to ensure they were communicating effectively on social media.

One pharma company acted on this information to provide support for patient groups to disseminate their key messages.

For more on how PatientView works with patient groups: click here.

For support in your activities go to PatientView’s patient resources: click here.

For social toolkit and assets: click here.

To take part or for more information, contact [email protected]

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