Patient Partnership Index - four years in and still going strong

Jenny Ousbey is the CEO and founder of OVID Health and the Patient Partnership Index. She is a recognised industry leader who began her career as a political journalist and has devised and led high-profile campaigns in-house and agency-side. Prior to launching OVID, she held senior roles in various agencies and is a former political adviser to a government health minister. Jenny is a regular speaker at conferences and events. In this article, Jenny reflects on beginning the Patient Partnership Index, some of the challenges faced, and launching it into its own business unit.

Patient partnerships have historically been transactional in nature; sums of money donated for hands-off projects or for insights and specified services. The financial power imbalance often led to disempowered and disengaged patient groups, and as a result, lower impact partnership outcomes.  
 
I knew this needed to change. Having led campaigns that exposed me to the ways in which partnerships can and have been done better, I set out to understand how we can ensure better collaboration across the board. I felt a benchmarking approach would bring the industry on a journey where they would be able to see what a gold standard project looked like, and how they could embody this, adding value to their work, and to the patients they serve.  
 
Three years on, and I couldn’t be prouder of what we have achieved through the Patient Partnership Index.  
 
Above all, I am proud we’ve continued to run the Index as a pro-bono recognition programme – not only is it the right thing to do, but it’s a way of making sure best practice reaches far and wide for the benefit of all. Everyone at OVID Health is encouraged to pursue their passion project, and the PPI is the way I live that value every day and express it to the team.  
 
I also love that every single person who joins our agency is utterly passionate about the work we do in patient advocacy and the Index. It’s a massive unique selling point for us as an agency! Everyone is invested in the Index and values the insights we glean from it – insights we use in creating patient advocacy strategies and plans, running patient advisory boards, and delivering templates for advocacy teams to support colleagues’ engagement with patients. This translates clearly into our work, as evidenced by the quality of entries and judges year on year.  
 
In fact, the constant desire for us to continually set the bar high in patient engagement at OVID is acutely felt. It was the team who pushed for the Index to extend its reach to allow patient organisations to submit entries on behalf of their pharma partners, and that is exactly what we are doing.  

Finding a Place for the PPI  
 
In the process of setting up the Index, there were a number of questions and challenges which ultimately shaped the final outcome and deepened our understanding of collaboration.  
 
The first hurdle was whether companies would want to share their projects with us. Whilst the outcomes are often publicly available anyway, there was a real risk companies would not want to share how they were developed or admit there were bumps in the road when working with patient groups. But they did. In fact, they very openly shared their learnings along the way. It goes without saying some information will need to remain confidential, but we have been pleasantly surprised by just how willing they have been in sharing mistakes, lessons, adaptations, and the growth throughout the process.  
 
Very quickly, we saw great appetite for sharing best practice through the PPI through the sheer number of entries we were getting. We also learnt a lot through feedback from companies and updated our processes to reflect this. For example, we streamlined our entry form after the first year so all that’s required is an introduction and summary from the company, and a testimonial from the patient groups. We’re also constantly evolving how we promote the benchmarked entries – starting with an insights report and an event, to more bespoke opportunities for them to showcase their work. 

What do companies gain from entering the Index? 

Above all – because companies didn’t have a standardised, accurate measure of impact in patient partnerships – the Index became a useful yard stick for how well they were doing in this regard and a source of pride for employees. We have seen companies shout about it on social media, add it to their email signatures and announce it internally to their companies – including giving presentations on it to colleagues around the world.

Sharing insights and best practice has been a crucial part of this process. We have hosted events with the gold winners afterwards and written insights reports each year on common trends. The events are incredibly well received with high viewing figures. The reports are always popular at conferences and taken by attendees keen to learn more about patient partnerships and patient advocacy work. Companies want to learn about what the rest of the sector is doing and how they can build and improve upon it. Ultimately sharing best practice and allowing others to grow, develop and evolve their patient advocacy strategies benefits patients.  
 
The most important thing I have learnt through the PPI is to challenge assumptions. As I’ve mentioned, my frustration with patient partnerships was the transactional nature of some. But I found some relationships between industry and patient groups are, and need to be, more transactional than others – and not always against the voice of the stakeholders themselves. In the case of the rare diseases space, some patient organisations rely heavily on the funding they get from pharmaceutical companies to simply exist, and, with limited resources behind them, many are happy with the status quo.

So, how can your company get involved?

The PPI is back in 2023, and we are currently registering entries! This year we have opened entries to patient organisations themselves, as we felt it was important for all partners to feel an equal ownership of the measure in the same way that they are equal partners in the delivery of the projects.  We’re also excited to announce another expert panel of judges, pulled from leading patient organisations, and representative bodies ready to judge the entries alongside me. These include returning judges John James, Sickle Cell Society CEO and Collette Goldrick from the ABPI, as well as our new judges Chris Askew, Diabetes UK CEO and Louise Fish, Genetic Alliance CEO.   
 
If this is something that you, or a patient organisation you know about, wants to get involved with, find out more here, or go right ahead and register for the 2023 entries. 
 
Entries are open to patient organisations for the first time across categories in Patient Advocacy; Communications; Market Access and Uptake; and Clinical Trials and Research and Development. Entries are judged against a bespoke metric developed in partnership with industry and patient organisations. 
 
We also have much more content where you can hear me talk through the journey, I have been on with the PPI, as well as a great Q&A with the Head and Deputy Head of Patient Partnerships on their own involvement with the PPI.

The Future of The Patient Partnership Index

At OVID Health we are always trying to think of new and innovative ways to help our clients, and the same goes for the Patient Partnership Index. There is nothing like the PPI out there, but we know we must continue to evolve to keep it fresh and continue to offer genuinely insightful and useful products for our clients, and the patients they serve.

Patient partnerships are a key part of successfully launching a new product to market. This means really engaging with them to understand the patient perspective and making them a part of the journey that you go on as a company, as well as making you a part of the journey their communities go through regarding diagnosis, treatment, and care. 

As such, we have now spun the PPI off into its own business unit and later this year we will be deepening our offering to focus on how companies can accurately measure and monitor the quality of their patient partnerships. We know clients are being asked to demonstrate the commercial value of patient partnerships, especially at a UK level where there are serious access challenges, and we have an increasing rebate via VPAS that is impacting their budgets. This product will really get to the heart of why it is important they do this well. 

About OVID Health and PPI 

OVID Health is a leading independent health comms agency specialising in healthcare public affairs, patient advocacy, and communications. Our purpose is to increase the number of people living healthy lives and inspiring good care through the power of communications.

OVID’s clients are pharmaceutical, biotech and health tech companies, health charities, public sector bodies, start-ups, and independent healthcare organisations. We are ranked 30th in PRWeek UK’s Top 150 healthcare communications agencies and we’re in the top 20 independent health consultancies in the UK.

We founded the global Patient Partnership Index in May 2020. It offers pharmaceutical and biotech companies an opportunity to showcase, benchmark and share best practice in their partnerships with patient groups. The Index has a sole purpose in mind: to improve patient outcomes through high quality patient-pharmaceutical partnerships. The Index allows OVID a unique insight into these partnerships between pharmaceutical and patient groups, providing us with an unrivalled awareness of the needs of both partners, and how they can optimally work together.

To discuss how we can support your patient advocacy strategy creation, relationship building, insights sharing, guidance for internal teams and more, get in touch at hello@ovidhealth.co.uk