November 2021:

Over two decades, PatientView has built and maintained a unique network of relationships with more than 40,000 patient groups worldwide.

For more than 20 years, patient advocates around the world have formed powerful organisations designed to ensure the best possible outcomes for all patients. Often voluntarily run and inspired by first-hand experiences, these groups have now become some of the most influential voices in global healthcare.

In a post-pandemic world, the importance of patient advocacy groups will continue to grow as patients focus on better therapeutic outcomes. The evidence for this is shown in PatientView’s recent research ‘Being Patient-Centric after a Pandemic’, which outlines how and why Covid-19 has created a new sense of urgency for the pharmaceutical industry to prioritise patient-centricity.

In PatientView’s latest ‘Corporate Reputation of Pharma’ research, we can see that the industry has undoubtedly learned the importance of listening to patients’ needs and incorporating these ideas into corporate strategies. This is a positive step, but there is still a lot of work to do, and patient groups will continue to campaign for better patient outcomes.

Reflecting on the importance of patient groups’ role in the future of healthcare, we have curated some helpful information on their impact below.

What does a patient group do?

Patient groups, otherwise known as patient advocates or health campaigners, help patients by providing information about living with and treating specific conditions, they raise awareness of these conditions, share information about screening and prevention, and many groups also offer direct support to those in need.

These groups also provide a forum for people to meet each other and to share mutual experiences as individuals face often deeply personal and emotional challenges

Has the pandemic changed how patient groups operate?

The Covid-19 crisis challenged patient groups across the world like never before.

Almost overnight, they became the major source of support and information for patients during lockdown who now had difficulty accessing their usual healthcare treatments and services. On top of increased demand, they also experienced a significant decrease in revenue and funding and have expressed that they sometimes felt let down by the lack of support from pharmaceutical companies.

Despite these new challenges and responsibilities, patient groups also find themselves in a unique position within the global healthcare landscape. Enriched with critical insight on the pressure placed on healthcare and patients alike, and entrusted with a deeper sense of responsibility from their members, patient groups sit at the cross-section of many factors set to define the industry for years to come.

Patient groups are increasingly keen to articulate what patients, the public, and their own groups need and expect from pharmaceutical businesses. The opinions of patient groups are particularly important, as they are the only stakeholder to network with every element of the healthcare ecosystem. They are positioned to provide a unique, holistic view of the industry and global health landscape and, conversely, they are well-placed to hold the industry accountable and to drive public scrutiny on key issues.

How does PatientView interact with patient groups?

Over two decades, PatientView has developed unmatched reach with patient advocacy groups around the world – our database includes 40,000 patient groups worldwide across most therapy areas and almost every country worldwide. No other organisation in the world can claim to have the same depth or breadth of access to patient groups and related research data.

Driven by our belief that patient views should be considered in all healthcare decisions, PatientView works to ensure patient voices are heard loud and clear by the pharmaceutical industry. Each year we survey patient groups on the Corporate Reputation of Pharma using the nine indicators of patient centricity model, and during the pandemic we spoke to over 1,500 patient groups to understand how pharmaceutical businesses can commit to ‘Being Patient-Centric after a Pandemic’.


patientView methodology infographic
PatientView’s methodology

We work hard to build bridges worldwide between patients and healthcare, ensuring patients have a voice and a platform while helping healthcare professionals to understand, react and improve.

Our research provides the pharmaceutical industry with unique knowledge, tools and mechanisms needed to bridge the gap between patients and the industry – driving better outcomes both for patients and the industry alike.

What can pharmaceutical businesses learn from patient groups?

Companies using our research range from multi-national household names to disruptive startups, regulators, academic groups, and consultants.

Although they may differ in size and cause, their challenges in light of Covid-19 are similar:

  • How can we understand the true impact of COVID-19?
  • What is the best strategy to react, adapt and deliver better outcomes for patients?
  • How can we tackle post-pandemic information fatigue and misinformation?
  • How do we justify new investment decisions when faced with an overwhelm of research and data?
  • How can we quickly and easily access the right data to drive decision-making at speed?

Patient views can help companies understand the true impact of the pandemic, providing key insights which have potential to improve strategies and activities that span across research and development, patient information, transparency, ‘beyond the pill’ services, policies on market access, drug delivery and much more.

Amidst this unprecedented global crisis, patient advocates are taking advantage of a unique opportunity to deliver better patient outcomes by engaging with the industry and shaping its future.

Find out more about ‘Being Patient-Centric after a Pandemic’.