Jenny Ousbey outlines what we’ve learnt from the Patient Partnership Index 2021
Ingenuity in the face of adversity
When my comms agency, OVID Health, and PharmaTimes launched the Patient Partnership Index in May last year, it was in remarkably different circumstances than we had anticipated. Yet as I reflect on when we announced last year’s results in July, in many ways things remain the same.
While time may seem to have stopped for many of us, for patient groups the past year has presented a series of new challenges, as well as exacerbating several existing issues. The COVID-19 pandemic has made the work of the Patient Partnership Index – an initiative aimed at creating positive change in the industry that is both far-reaching and long-lasting – even more essential, and it has been invigorating to see the tremendous progress in pharma-patient partnerships and how they’ve evolved in our second year.
The Patient Partnership Index 2021
The entries to the Patient Partnership Index this year were very strong and are a testament to the ingenuity and commitment of pharmaceutical companies to working in partnership with patient groups, both before and during the COVID-19 pandemic. Though the pandemic has certainly created huge challenges for patient care, it has also helped to focus minds on how partnerships can best deliver value to both the patient group and the patient communities they support.
On top of this, the pharmaceutical and biotech industries have understood the patient groups they work with require much greater flexibility at this time of unprecedented demand. Pharmaceutical companies have been very open to listening to and working with patient groups to understand their needs and have designed programmes collaboratively to address these.
In particular, the judging panel for the Patient Partnership Index 2021 was incredibly impressed with the creativity displayed across many of the entries submitted this year. In a period of great demand on resources, time and capacity, partnerships looked at new and exciting ways to engage with their community to develop a deep and meaningful understanding of what issues were important to them. From there, partnerships looked at how their work could be communicated in a way that was different and engaging, achieving cut-through to key campaign audiences to deliver real change for patients.
Co-creation was another measure that entries this year really impressed us on. Top-scoring partnerships saw pharma companies and patient groups working together closely to design programmes and campaigns, involving a range of views and insights that reflect the diversity of experience within patient communities and draw on the strengths of both partners to deliver advocacy with impact.
The progress made by patient partnerships since last year was also especially apparent in how companies demonstrated the genuine impact against their objectives as well as those of their patient group partners. Examples ranged from pharmaceutical companies providing networking opportunities for patient groups at a time when knowledge-sharing and engagement has been restricted, to working with patient groups to craft educational resources that support patients through the everyday struggles of getting through a once-in-a-lifetime public health crisis while also managing the risks and day-to-day challenges of a health condition.
Alongside a greater focus on measurability, we also saw a marked increase in partnerships valuing the diversity of their patient community. Advocacy partnerships are now trying harder than ever to reflect and showcase the voices ‘less heard’ in their disease areas, both in the media and in the design of disease awareness campaigns, to ensure greater inclusivity in how these partnerships work as well as how they are perceived. Considered but progressive changes like these are things the Index was created to celebrate, and it’s very exciting to already see how patient advocacy and communications are adapting and improving to meet the demands of the past year.
Going for GOLD
Best practice is at the very heart of the Patient Partnership Index, and in the three GOLD standard entries we awarded this year, there were fantastic lessons to share and explore. What stood out to us as judges in all of the GOLD standard entries this year was that the projects were co-created from the very start, involving the patient groups and patients themselves at the earliest stages so valuable insights could inform how the project was designed.
Partnerships that were awarded GOLD also exemplified a commitment to forging a long-term relationship with the patient group. By placing value in the contribution patient groups can make and seeing them as equal partners, the projects and campaigns that result from mature, engaged partnerships are also the ones that both partners will find most valuable.
This is by no means to say the best partnerships are the longest-standing ones. Indeed, the judges this year were impressed by the high quality of pharma-patient partnerships that were young or still in their early stages. Though established relationships certainly helped to ensure partners worked together more effectively, most important was the drive and motivations behind the partnership. The very best partnerships not only had a strong focus on how their work would lead to real benefit for patients, but were also incredibly considered – building on real, lived experiences of patients to identify and address issues that mattered to them.
Lessons for 2022
Each year of the Patient Partnership Index presents both new opportunities and challenges. Having judged the entries last year, I was heartened to see entries that built on the lessons of the Index in 2020 and that demonstrated and showcased the progress made by industry in only one year.
However, there is always room for improvement. One aspect that judges especially felt could be explored by entries for next year’s Patient Partnership Index is how pharmaceutical companies showcase some of their brilliant work and projects internally.
There were examples of teams who had undertaken fantastic, creative projects, but had some way to go on sharing this back internally with their wider colleagues in other parts of the company. In order to put patients at the heart of how the pharmaceutical industry operates, it is vital that companies embed patient partnerships as a way of working. This can be achieved much more rapidly when the success of partnerships is showcased, demonstrating their immense value to both the patient group and the pharmaceutical company.
What’s next for patient advocacy?
As well as reflecting on the lessons from this year, we’re keen to explore what the future of patient partnerships holds. It’s for this reason we’re bringing together senior leaders from pharmaceutical companies, key figures from patient groups they have partnered with, as well as this year’s Index judges, for our virtual panel discussion, Patient Partnership Index 2021: What’s next for patient advocacy?
The event will focus on what the future looks like for patient partnerships – how partnership working can be improved, what trends we think we might see, and what kind of pharma-patient group partnerships will thrive in years to come. Taking place on the 6th July, the event is open to pharmaceutical companies, patient groups, NHS and non-profit organisations. To book your place and find out more, visit the Patient Partnership Index website at: https://patientpartnershipindex.co.uk/events/
All of the judges on our expert panel were impressed by the range of projects taking place across a wide variety of disease areas. It is a privilege to evaluate and learn from the leading examples in industry, and it is fantastic to see so many companies willing to try something different, acting innovatively to build projects that are both interesting, creative, and effective.
The Patient Partnership Index presents an opportunity to explore some of finest projects taking place at the moment. We hope it will inspire teams on both sides of patient partnerships to look at how they approach working together, incorporate lessons from the Index into their projects, and ultimately help deliver meaningful change for patients everywhere.
Patient Partnership Index 2021: the results
LEO Pharma (UK entry)
LEO Pharma (Above Country entry)
Bristol Myers Squibb
What the judges said
“Partnerships between pharmaceutical companies and patient groups are so important in how we work to improve outcomes for patients. The entries to this year’s Patient Partnership Index demonstrated the creativity and breadth of this work, with the strongest entries showing how patient groups and companies worked towards clear, shared goals to make a real difference to patients.” Elliot Dunster, executive director, Corporate Affairs and Devolved Nations, The Association of the British Pharmaceutical Industry (ABPI).
“It was a pleasure to see the incredibly high standard of entries to the Patient Partnership Index this year. COVID-19 created many challenges for health charities, but it was great to see companies quickly adapt their processes to ensure that joint projects could still go ahead and have a big impact on patients. It was encouraging that many companies now bring in health charities and patient representatives at the start when designing projects and campaigns. This ensured the patient voice and experience was truly reflected in the aims of the partnership. I left the judging session feeling excited about what the future holds for patient advocacy, and how I can bring the insights from the Index into my own work.” Sarah Woolnough, chief executive officer, Asthma UK and the British Lung Foundation.
Jenny Ousbey is founder and managing director of OVID Health and chair of judges for the Patient Partnership Index