PicnicHealth's PNH Research Study

Ashanthi De Silva: Hi! Everyone! Thanks for joining. We'll give people about a minute or 2 to come in, since this is is the middle of the day, and I know people might be joining from work or wherever they are. But thank you for being here. Hi, everyone! Thank you for joining. We will go ahead and get started. and we thank you. Thank you, Ashley. So welcome to get organized and get ahead with PNH in the New Year. Thank you for joining us today. My name is Ashanti De Silva, and I am a community partnerships manager at PicnicHealth. It's really wonderful to be here with all of you today. and I will go ahead and share our agenda, so you can see what we're going to discuss. Excuse me, so I will share a little bit about PicnicHealth and the PNH research we're doing and share a tool that we have as well to help you manage your care this year. and then I will hand it off to our 2 wonderful speakers, Erin Fortin and Brandi Lewis.

All right. Thank you everybody for joining. We are so excited to chat with you and introduce you to PicnicHealth and real-world data research for Alzheimer's and dementia. So just to give you a quick rundown of how tonight will go. We'll do some brief introductions. I'll give you an overview of what PicnicHealth is. I will actually demo the timeline for you so you can see what it looks like and then Mary will share a little bit of her story and we can open it up for questions. So just a quick introduction. Hi, I'm Brittany, I'm a community partnership manager here at PicnicHealth. I work with our lovely change champions like Mary, who I'm sure we are familiar with. I am also a former care partner for my mother, who had dementia. And Mary, I'm sure we all know you, but I would love it if you would just quickly introduce yourself. 

Perfect, awesome. Well, thanks so much Allie, and I will go ahead and move into giving everybody some background on PicnicHealth. So, who is PicnicHealth? PicnicHealth was founded in 2014, when our CEO Noga was diagnosed with Crohn's. And at the time, she was in the process of seeking opinions from multiple specialists, she just had this diagnosis. And instead of, you know, being able to focus on her care and advocating for herself, she was trying to track down medical records. So she was waiting in line. She was placing multiple phone calls, not exactly what someone wants to be doing when they're just diagnosed with something. And she was like, Hey This system is completely broken and we need to fix it and thus, PicnicHealth was born. So in 2015, the very first thing that we launched with was our digital health timeline. I will go ahead and give you a demo of that later, but very essence. It's all of your medical records in one easy place and we take care of the work for you as far as gathering them goes. And then initially when we launched, we were a paid for service and we had to take a step back as a company because we know there's already so much of a burden of costs on patients in healthcare, so we did not want to charge them for our service but we needed to figure out a way to do that. So in 2018, we realized that there was a unique opportunity for our real-world data and we can partner with researchers. And that's kind of where we sit now. So we have our real world data research portion and we also have our health timeline and in partnering with researchers, on real world data research, we are able to offer that timeline for free and actually compensate a little bit, which we will also talk about as well.

Thank you for joining us for Caregiver Tips for Alzheimer’s in partnership with Donna Marentay of New Dawn Dementia Understandings! Click the links below to view the webinar recording and Donna’s handouts.