The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the health domain, there is a fascinating ongoing debate about the interaction of pharmaceutical companies with the internet (John Mack's Pharma Marketing Blog is the main hub of discussion), as well as the ways in which non-profits should be using innovative new tools. That was the focus of a workshop recently convened by the New England chapter of the Arthritis Foundation at the Equinox Hotel in Manchester, Vermont.
PatientsLikeMe was invited to share our experiences of using the internet to empower patients, change perceptions in the medical field, and effect real change through shared information. Here are some of the topics discussed:
- This is not a new way to use old techniques
Social media is a two-way street, and you have to engage with your audience with openness and transparency. The vast majority of people support your activities, but there will always be some people with tough questions on the most efficient use of funds, priorities for campaigning, or the direction your organization is going in. By participating in social media, you are signing an unwritten contract to interact with your audience - it's the right thing to do but it takes planning and resources to do it well. - "Free" doesn't mean it won't cost anything
Although many new media sites don't typically charge a fee, you should keep in mind that there are overheads for non-profits in terms of staff time, training, consultancy advice, software, and equipment. - What problem are you solving?
There's no point in setting up a Facebook fan page or a Twitter account without a clear idea of what you're trying to accomplish; i.e., Increased membership amongst patients? Increased awareness of your disease in the general public? Fundraising? It's also important to survey the online landscape and decide whether you will be adding something new or replicating an existing resource that's already out there. If there is already a patient-run support group online, do you really need to set up your own "official" version?
We are looking forward to continuing the discussion to help patients benefit from new ways of doing things, while drawing upon the vast experience of those in the non-profit world who have been fighting for patients for many years.