The results of the 2024 Patient Partnership Index have been announced, recognising best practice in partnerships between pharmaceutical, biotech or MedTech companies and patient groups.
Entries ranged from campaigns delivered in market, to coalitions driving change on a global scale. Over half of this year’s entries involved partners from outside of the UK, including Italy, France, the Netherlands, Eastern Europe and Central Asia, Mexico and the United States.
The projects which achieved GOLD or SILVER standard in the 2024 Index are as follows:
GOLD Standard
- Gilead Sciences – RADIAN partnership
- Medicines Discovery Catapult (MDC) – Cystic Fibrosis Antimicrobial Resistance (CF AMR) Syndicate
- RareCan – RareCan Brain Tumour Trial Access Partnership
- Recordati Rare Diseases – Q bag for children with high-risk neuroblastoma
SILVER Standard
- Beckley Psytech – Patient Council
- Boehringer Ingelheim – “On my skin” – a coalition for GPP in Italy
- Boehringer Ingelheim – A Blueprint for Patient Involvement in Medical Device Development
- Boehringer Ingelheim – Global Patient Partnership Summit
- Fight Bladder Cancer – Empowering Bladder Cancer Patients Through Comprehensive Support
- GSK – “Spot Check” – a womb cancer disease awareness campaign
- Patients Association – Patient Experience of Diagnostics
- Recordati Rare Diseases – #THISCUSHING disease awareness campaign
The Index, developed and launched in 2020 by leading independent healthcare communications consultancy, OVID Health, benchmarks and evaluates the quality of partnerships between industry and patient groups in the fields of patient advocacy, communications, public affairs, clinical trials, and R&D. This year, for the first time, the Index has been endorsed by both the Association of the British Pharmaceutical Industry (ABPI), the UK trade organisation for over 120 companies producing prescription medicines, and the Healthcare Communications Association (HCA), the membership organisation representing healthcare communications professionals.
A key theme among this year’s high-scoring entries was the bottom-up, patient-driven conception of projects to tackle unmet needs, such as for better community-centred care, patient resources, online portals and platforms, and even a new medical product.
For example, the Q-bag, an IV pump backpack for children with high-risk neuroblastoma, was developed out of a partnership between Recordati Rare Diseases, the Dutch Childhood Cancer Association and the local patient community – and was awarded GOLD Standard.
Speaking about this partnership, Vicky Vercauteren, General Manager, Benelux, at Recordati Rare Diseases said: “It was truly a collaborative effort from start to finish from a diverse range of stakeholders, all of which had a simple focus in mind: Improving the quality of care for young people undergoing treatment for neuroblastoma. We are incredibly heartened that in what is a devastating time for families, the Q-Bag can offer children more freedom of movement and the feeling that they can be more themselves and less a patient.”
Reflecting on their GOLD Standard entry, Carmen Villar, VP, ESG and Corporate Citizenship at Gilead Sciences said, “Gilead is honored to be recognised on the Patient Partnership Index for our RADIAN initiative with the Elton John AIDS Foundation, which addresses the rising HIV epidemic in Eastern Europe and Centra Asia. Over the past five years, RADIAN has directly reached approximately 247,000 people with HIV services, trained more than 13,000 frontline workers in stigma reduction, facilitated treatment for 25,000 people living with HIV, and provided about 95,000 HIV tests. We are proud of this collaboration and all of the progress we have achieved together.”
Katy Leonard, UK Oncology Patient Advocacy Lead at GSK said: “At GSK, we place high value on meaningful collaboration with patient organisations to understand the needs of people who are affected by life-limiting illnesses and to raise awareness in areas of unmet need. It is a true honour to be awarded silver standard for our partnership with two UK patient organisations and receive the recognition from our industry peers for a well-executed co-created patient centric campaign. The feedback from the judging panel gives us the determination to keep striving for high standards in our partnerships with patient communities.”
Piers Kotting, Chief Executive Officer of RareCan, said: “The Patient Partnership Index awards feature some of the big names in global life sciences, so we are thrilled that a partnership led by a UK startup has been recognised with GOLD Standard. There’s been plenty of talk with the election looming of the importance of both the startup sector and inward investment from the global pharmaceutical industry, and our project demonstrates both – and proves how a desire to improve outcomes for patients can foster really exciting collaborations between patient organisations and industry.”
Jenny Ousbey, Founder of OVID Health, and Chair of the Patient Partnership Index judging panel, said: “The projects entered into this year’s Index varied in scope, scale and focus. Some built on previously established partnerships, while others represented new collaborations, but what shone through all the best partnerships was a commitment to co-creating solutions which make a real difference for patient communities. In a context of increasing pressures, I was heartened to see that working in partnership with patient communities is no longer viewed as an optional extra.”
To find out more about the Patient Partnership Index and previous Index results, explore the Index website at www.patientpartnershipindex.com or contact the team at info@patientpartnershipindex.com.