Reinventing
patient engagement

We often hear people in the pharmaceutical industry, as well as patient organisations, say they don’t like the phrase patient-centricity. Perhaps it is less the phrase itself but the fact that we need a phrase like this at all. 

So why does an industry that has saved and changed the lives of millions of people by researching, developing and manufacturing medicines and vaccines need to show it is patient-centric? Or required to make a concerted effort internally to be patient-centric? It’s for a reason that’s not talked about much – people can find it hard to reconcile a company that makes a profit by treating diseases, with having the interests of patients at its core.

In October, OVID Health and PharmaTimes held the first ever Patient Partnership Index conference, where we heard some gold-standard examples of companies who had made remarkable progress in reconciling this conflict.

Through equal and impactful partnerships, they empowered patients while also helping to meet the commercial goals of a company. The companies who won awards had made patient engagement a business priority and truly valued the insights patients brought.

Listening to the discussion, it became clear that when patient engagement is a business goal, partnerships move from transactional to brave and transformational for patients. We heard some great examples, and they were all grounded in common themes.

Budgets are set year-on-year and priorities can change with each business planning cycle, and this is a huge frustration to many patient groups. They want a partnership that will empower them to achieve long-term, impactful change for their patients. As David Martin, chief executive of the MS Trust, explained: “It takes more than a year to achieve decent impact…the sector is nervous about (focusing on) impact (for patients) because of the long-term aspect of it.”

All our award-winning entries to the Index cited senior level buy-in within their company as important in securing a successful and impactful partnership with a patient group. Having an executive board member or a general manager who takes an active role in listening to patients helps the company take a longer-term view, which in turn fosters partnerships that achieve more for patients and its business.

This senior level buy-in is perhaps easier for the R&D or manufacturing part of an organisation to deliver – the place where commercial and patient goals intercept is much clearer.

It’s thankfully become common practice to involve patients in designing clinical trials and, although there’s lots of room for improvement in how we do it, the value of listening to patients and working together is clear. For someone working in manufacturing, the motivation to stick to the highest quality standards is obvious – it’s the patient at the end of the supply chain who relies on the drug you are making. As Ron Daniels, founder and executive director at the UK Sepsis Trust, tells us from his experience: “A human voice telling them how vital their work is and how it has impacted on that individual’s life can be hugely empowering for people (in these parts of a company).”

Where the reconciliation becomes more challenging is in the pharmaceuticals or sales part of a company, where employees are closer to profit-based goals and where industry regulations around engaging patients can make them nervous.

Our gold standard companies embedded patient engagement at all levels and in all sections of their organisation. They did this by making it easy for everyone to hear the voice of patients and being clear on the governance framework they need to work within.

Companies were creative in using human stories even in the most corporate of settings to grab the attention of employees. They conducted audits with patient groups as part of a listening exercise and had simple processes in place for engaging with patient groups. This meant patient insights were at the fingertips of their most senior and most junior employees.

Dr Natalie Bohm, medical affairs lead Corporate Affairs & Health and Value, Pfizer UK, described this. She said: “It’s really up to us to reflect what we need to do culturally and from governance structures… to enable those relationships to happen, because otherwise we will always end up with these transactional relationships. Embedding that in our culture is about empowering everyone across the organisation to be able to understand, reflect and appreciate the impact of what it is that we do (for patients).”

Our keynote speaker, Jess Mills, chief executive of the Tessa Jowell Foundation, explained brilliantly how a deep understanding of the issues faced by people you are trying to help translates into great leadership. She told us how her mother, Baroness Tessa Jowell, would always want to spend time with the communities she helped – by “getting the dirt under her fingernails” to give her a full understanding of the challenges being faced.

I also know the importance of choosing the right issue to tackle together. As Nicole Farmer, general manager for UK & Ireland, Sanofi Genzyme, said: “The important thing is, on that common ground (identified with patient groups), what do we choose to build? If you don’t have impact or action, that defeats our shared purpose.”

The most successful partnerships are not only rooted in a shared purpose and a common understanding of the root cause of a challenge patients are facing, but a realistic view on what can be achieved together – for patients and for a company.

Sometimes the simplest ideas can be the most impactful. Like the Not Every Disability is Visible campaign, where Crohn’s and Colitis UK and Janssen teamed up to tackle a problem that patients said was “a massive issue”, but wasn’t political, so progress could be made quickly. Through this collaboration, they introduced signs on toilets in UK supermarkets to empower patients with invisible conditions, like Crohn’s and colitis, to feel comfortable using public toilets that previously were marked with an image of a wheelchair.

We know it’s crucial that both partners are honest and clear on what they want to achieve and, importantly, how they are going to measure the benefits to patients as well as to business. According to OVID Health managing director and Index judge Jenny Ousbey: “Whether a partnership is trying to create policy change, behaviour change or inform healthcare professionals… if we take demonstrating real value seriously, we can undercut some of the caution and cynicism (about these partnerships).”

Good measurement can also help all partners stay focused on their goals. When there are many issues we could tackle, we can fall into the trap of what David Martin from the MS Trust coined as ‘initiative-itis’ – a tendency to dilute impact by adding to our to-do list. Nicole Farmer from Sanofi Genzyme commented on this: “If we don’t track our impact, we get what I call project drift. And the longer a project drifts, the more patients continue to be disadvantaged.”

Finally, a word that came through loud and clear in our Patient Partnership Index conference was ‘bravery’ – be brave in your ambitions and ideas. It’s bravery that will allow us to have honest conversations about how patient engagement makes good business sense. Once this has been accepted then more partnerships will become equal and impactful.

‘The most successful partnerships are not only rooted in a shared purpose and a common understanding of the root cause of a challenge patients are facing, but a realistic view on what can be achieved together’