Posted by Lori Piscatelli Scanlon | September 24, 2009
Check out the October issue of WIRED magazine! PatientsLikeMe makes “The Smart List: 12 Shocking Ideas That Will Change the World.” In an interview with Brendan Koerner (“Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. What do you think?
Earlier this month, Jamie also gave a rapid fire presentation on the future of medicine at the 2009 Gov 2.0 Summit. He addresses how we can better answer this question for patients: “Given my status, what is the best outcome I can achieve and how do I get there?” Here’s how (with openness leading the way):
(l-r) PatientsLikeMe R&D Director Paul Wicks with Sue Nesci, Chief Public Health & Policy Officer of NE Arthritis Foundation and Vermont Governor Jim Douglas (keynote speaker)
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.
Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!
If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.
Once again, special thanks to our summer intern, Shane, for his work on the video!
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.