PatientView’s latest research redefines what it means to be ‘patient-centric’ with an updated model fit for a post-pandemic industry.

Back in 2017, PatientView produced an original, evidence-based model for ‘Being Patient-Centric’ which was shaped by extensive feedback from over 1,500 patient groups. Nine key indicators were identified by patient groups as a measure of the pharmaceutical industry’s ability to be patient centric.

Building on this original model, PatientView has now received and analysed insights from 1,589 patient groups wordwide during the Covid-19 pandemic – as outlined in our ‘Being Patient-Centric after a Pandemic’ research.

Lessons learned from the research highlights the need for pharma to reassess patient centric approaches in light of this crisis.

‘Being Patient-Centric after a Pandemic’ outlines what these nine key indicators mean for your business and provides actionable insight for the pharmaceutical industry to react.

Find out more below about the nine key indicators outlined in ‘Being Patient Centric’:

1. Patient information

Patient information is the main link between pharmaceutical companies and patients. The importance of this connection only intensified during the pandemic as patients looked for critical information on how their personal circumstances would be impacted by Covid-19 or a Covid-19 vaccine.

Previously, the expectation was only for information to be consistent, current, balanced and useable. Post-pandemic, patients now put a greater emphasis on getting bespoke information, tailored to their personal needs.

2. Patient safety

A company’s reputation can change swiftly when there are concerns around safety, and pharmaceutical companies’ responsibility to patient safety should always extend far beyond regulatory boundaries.

Pre-Covid, and in PatientView’s 2017 model, patients’ expectations on safety focused on reliable supply and comprehensive safeguarding.

During the pandemic, patients became aware of the need for more data on patient safety, especially for this to be personally relevant. Their expectations transformed to focus on reliable treatment supply, personally relevant safety data and transparent safety processes.

3. Patient-centred products

In any industry, success lies in serving customers’ needs. It’s no secret that in the past pharmaceutical companies have developed and sold products which have not been developed with patient-centricity foremost. Indeed, being driven by patient needs was sometimes difficult due to barriers to gathering insights directly from patients. There is always a pressure for companies to extend intellectual property rights on patents, which could be done by developing products with small adaptions to the originals – a practice not driven by patient needs or innovation.

During the pandemic, PatientView collected new feedback from patient groups on patient-centred products. The key takeaways focused on the need for more personalised treatments, the involvement of patients when defining priorities for products, and also a need to support patient advocacy in deeper and more meaningful ways.

4. Transparency

The patient community have defined three cornerstones of transparency for pharmaceutical businesses: (1) pricing; (2) sharing of clinical data; (3) disclosure of pharmaceutical funding for healthcare stakeholders.

Even before the pandemic, the issue of transparency was commonly discussed due to inequities in healthcare and the increasing economic pressure on healthcare systems.

There are added layers of complexity when we talk about pharmaceutical companies being transparent. Firstly, the introduction of GDPR in 2018 changed how patient data could be collected, processed, and stored. Secondly, from the industry’s perspective, sharing corporate data can undermine their commercial interests.

Despite this complexity, the pandemic has triggered increased expectations for full transparency and trust between the industry and the public, for instance, about the clinical value and cost of the different vaccines. These expectations are probably irreversible and will remain a driving force for patient expectations for drug treatments moving forwards.

5. Integrity

Patient groups’ views on the integrity of the pharmaceutical industry have always hinged on a balance between the industry’s need to generate return for investors, and their responsibility to patients and society.

Throughout the pandemic, we watched companies in an industry known for caution and conservatism, at a time of great uncertainty, demonstrate scientific leadership and technological capabilities. Patient groups hoped the industry would also help in protecting and supporting patients whose normal access to healthcare became limited, but this was not always the reality.

Pre-Covid, patients expected the actions of pharma to demonstrate a culture of high integrity. Our research in 2021 shows that pharma’s actions in a post-Covid landscape must go beyond this, and they must always guarantee a positive impact on healthcare.

6. Relationships with patient groups

Relationships between the pharmaceutical industry and patient groups around the world provide patients with unique insight into how pharmaceutical businesses act and think. This means patient groups often make their judgement of pharmaceutical businesses based on the quality, depth and sense of engagement in those relationships.

Those relationships have changed amidst the pandemic. As demands from patients escalated, many patient groups reported feeling abandoned or overlooked by the industry during the pandemic.

PatientView’s research outlines how patient groups expect pharmaceutical businesses to have a better understanding of the ecosystems of patient groups and their objectives.

Mutual understanding, deeper relationships, more flexible funding of patient groups, and stronger communication should all be considered key qualities in a healthy patient group relationship moving forwards.

7. Support and services

Sometimes referred to as ‘beyond the pill’, the pharmaceutical industry has provided support and services to patients for decades. These services are not usually assessed for patient value as thoroughly as the industry’s commercial products, and sometimes overlap with programmes offered by patient groups.

The Covid-19 pandemic acted as an effective filter in showing which services offer genuine help and support, then highlighted unmet patient needs which also require support.

Post-pandemic, patient groups expressed a need to be included in pharma decision-making to determine which support and services are truly valued by patients.

8. Access to medicines

In the mid-1980s, the HIV/AIDS patient lobby was successful in tackling issues of inequality in healthcare. Their work achieved price cuts to antiretroviral drugs so more people could access treatments. Since then, patient groups have been playing a critical role in conversations that influence access to medicines. After all, innovations in healthcare are worth little if patients cannot access them.

With a global public health crisis like Covid-19, particularly in relation to vaccination, political pressure is mounting to find solutions to health inequality around the world.

The ‘access to medicines’ indicator means that a patient-centric pharmaceutical company needs to put a greater emphasis on improvements in health equities when developing effective policies on market access and drug delivery.

9. Engaging patients in R&D

Research and development can be viewed as the driving force behind the pharmaceutical industry, creating innovative medicines and discovering ground-breaking new treatments. However, patient groups have until quite recently, been kept distant from R&D besides participants in clinical trials and third-party research.

In PatientView’s 2020 issue of ‘The Corporate Reputation of Pharma’, only one fifth of our respondents (1,920 patient groups across the world) stated that pharma was ‘excellent’ or ‘good’ at engaging patients in R&D.

Patient groups told PatientView during the pandemic that they wanted to see inclusivity of diverse populations in research, greater consideration given to patient convenience, and easy methods for patients to share real world data.

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