The opinions expressed in this article are those of the guest panelists and do not reflect the view of Astellas.
Galvanizing collective action among healthcare stakeholders is key to improving patient care. Change Together’s recent webinar looked at how this can be achieved, sharing best practice examples from the advocacy community, and offering insights into how to use the evolving platforms of social media to connect with a target audience.
The webinar, “Driving positive change for patients through collaboration and education,” was the culmination of a monthlong program to raise awareness of bladder-related conditions. Jessica Bateman, Patient and Research Advocacy Manager at the Urology Care Foundation; Phyllis Greenberger, Senior Vice President for Science and Health Policy at HealthyWomen; and Steven Gregg, Executive Director at the National Association for Continence, formed the webinar’s expert panel.
We look at some of the panelists’ key insights.
Jessica Bateman, Patient and Research Advocacy Manager at the Urology Care Foundation
For UCF – the official foundation of the American Urological Association, and the leading US nonprofit for urological health – partnering with those who have aligning advocacy agendas is key to fulfilling its role to incorporate the patient perspective into its advocacy initiative and strengthen its legislative messaging.
In 2013, to raise awareness about bladder health and encourage dialogue between patients and physicians, the Foundation brought together 34 patient and physician advocacy groups to form the Bladder Health Alliance. One of the Alliance’s key achievements was the official recognition last year of November as Bladder Health Month. This was realized by mobilizing grassroots advocacy efforts, including letter writing campaigns and visits to Capitol Hill, resulting in the passing of a health resolution introduced by Representative Eliot Engel and a senate measure introduced by Senator Mark Kirk.
To further maintain momentum, and get its message heard above the noise of social networks, the Alliance started its 2017 Bladder Health Month activities with a Thunderclap. This led to more than 50 advocates posting a note about Bladder Health Month on their social media pages. “Collectively, this message was seen by more than 135,000 individuals,” notes Bateman.
Phyllis Greenberger, Senior Vice President for Science and Health Policy at HealthyWomen
HealthyWomen, the leading American nonprofit information source on all women’s health issues works with industry and all women’s advocacy and disease groups, including many minority groups such as the Black Women’s Health Imperative and the National Hispanic Medical Association.
The organization is now heavily involved in policy and advocacy, with a major campaign centering on the threat to the 26 preventative services posed by changes to the Affordable Care Act. To get its message out, and stir its 800,000 monthly website visitors to put pressure on congressmen, the nonprofit held a briefing in Congress and a media briefing in New York. It has also contributed blogs to the Huffington Post.
Breakfast meetings and research and innovation events are felt to be key to keeping the audience informed, and in helping develop relevant policy and advocacy outreach. A recent breakfast briefing was held with Marsha Henderson, Head of the Office of Women’s Health at the FDA, to discuss the Administration’s action on women’s health, and more are planned. Meanwhile, proposed research and innovation events will look specifically at sex differences. There is “much work to do in this area,” says Greenberger, in particular “what medications work differently for women than men.”
Steven Gregg, Executive Director at the National Association for Continence
With low levels of engagement by women suffering from bladder health problems, and more than 25 million Americans affected by bladder or bowel control issues1, the question posed by the NAFC’s Steven Gregg is: does social media actually work for advocacy groups?
He believes it does if you know your audience, know what you want your social media to do, and are clear about the direction in which you should be going. In line with this thinking, the consumer-facing NAFC rebranded its social media platforms as B Health – bladder and bowel health – realizing people may not want to be seen to follow an incontinence organization. It also adopts a four-step approach to communication by:
- Developing an annual calendar of content that looks at key events
- Working with other organizations, on a quid pro quo basis, to share content
- Considering how best to engage with patients
- And by tracking and analyzing what works.
Early on the NAFC realized its information needed to be easily accessible, so it focused on making sure it was mobile ready, and about 55% of its traffic now comes from smart devices.
Gregg also points out that social media has an immediacy, which means trial and error may produce results. But not all platforms are equal, says Gregg. “What works on Facebook does not necessarily work on Twitter, so you have to be willing to experiment on both.”
- NAFC (2017). Conditions overview. Available at: https://www.nafc.org/conditions-2/ (accessed December 2017).