28 Jun Patient Advocacy: working in partnership
Here at OVID Health, we are proud to be experts in supporting patients to secure change through patient advocacy. In this series of blogs, we are sharing some of the insights we have gained working with our clients and running the Patient Partnership Index.
Telling your story
Whenever we work with patient groups here at OVID, whether to improve disease awareness, secure new research funding or advocate for changes to government policy, one of the things we stress time and again is that patients should “tell their story”. The lived experiences of patients and their families is moving, powerful and (more often than not), illustrative of the key issue(s) which the patient group is looking to address. It’s also empowering for individuals to speak openly about their experiences.
It is true that a passionate campaigner with an emotive story who can reach the right audience has the potential to secure meaningful changes.
But most of the time, one story alone is not enough. A single story can be ignored by the audiences you want to influence. It can be dismissed as an exception. In extreme cases, it can even be undermined by bad faith actors who don’t want to address the problems the story highlights.
Strength in numbers
Where one story is easily dismissed, 10, 100, or 1,000 stories are harder to ignore.
When Joeli Brearley was sacked, just two days after telling her employer she was pregnant, her only recourse was to legal action. But by collecting thestories of thousands of women, her campaigning organisation, Pregnant Then Screwed, has been able to shape policy, being widely credited with a key role in delivering the recent UK government commitment to expand free childcare to 1- and 2-year-olds. Similarly, Greta Thunberg’s school strike protest was an inspired idea, but without thousands of other students joining the movement, it would not have gained the global awareness it did.
The easiest way to expand the reach of patient advocacy, then, is to build partnerships with other patients with similar experiences. Indeed, this is how most patient groups start.
Sooner or later however, most patient groups want to do more, whether that means providing support and advice to more people living with a condition, increasing disease awareness, or building a case for policy change.
This is why diverse partnerships are essential to effective patient advocacy.
A helping hand
Consider a small patient advocacy group, focused on a rare disease. Because few people are affected by the disease, the group may find it harder to fundraise to provide essential support services. They might not have the experience to contribute to the development of a new government policy affecting them. Or they might lack the contacts and capacity to deliver a disease awareness campaign which could improve early diagnosis.
Working in partnership with a pharmaceuticals company could change all that. The company could bring financial resources to maintain a patient support service, experience in public affairs to help shape government policy, or the national brand recognition and capacity to deliver a high impact disease awareness campaign.
What’s more, the benefits of this partnership cut both ways. By improving disease awareness, or addressing policy barriers which limit research or treatment, a pharmaceuticals company can increase uptake of new therapies in the disease area. This is good for both the company’s bottom line and for patient outcomes. Similarly, by supporting a patient advice service, the pharma company can build a long-term relationship with the patient group, positioning themselves as a trusted voice in the therapy area, which in turn supports future research activity, regulatory submissions, or treatment uptake.
In other words, partnerships are symbiotic, creating an interlinked ecosystem in which both parties’ benefit.
Of course, partnerships can be made up of more than two organisations. Multi-stakeholder partnerships can sometimes be harder to manage, as different organisations will have different priorities or approaches. But where all stakeholders align behind a clear shared objective, the added scale can ensure work is ever more impactful.
Patient advocacy is about delivering change to improve patients’ lives. Nobody can do that alone.
If you would like to know more about how OVID Health can help you establish meaningful partnerships which support patient activity, get in touch at [email protected].