Thursday, 28 May 2020

TOGETHER, A MOM AND A PATIENT INVENT WHAT'S HELPFUL

Brenda Agnew is a friend and colleague in the disability family/caregiving community in Canada. So when I saw her image in the National Post while scanning my newsfeed the other day, of course I was intrigued. Brenda is the Mother of her son Maclain  who has cerebral palsy, but she's also a creative problem solver.  She and her friend Kristy Dickenson (who suffers from both Ehlers Danlos Syndrome and Ankylosing Spondylitis) compared notes about managing complex health conditions at home and they agreed that there had to be a better way using technology. Their idea of an app called Chronically Simple was born. I asked Brenda to tell me more and here are her responses to all my questions! 


Q: Brenda, tell us about your own caregiving experience and why you became involved in Chronically Simple.
A: My son Maclain is now 12 years old and has a diagnosis of severe Cerebral Palsy. In addition to his CP, he is also profoundly deaf and has many Gi issues. He is an amazing, smart, funny and handsome boy, who requires 24 hour care for all of his daily living tasks. Everything from eating, and drinking, dressing, bathing, even changing the tv channel are all tasks that Maclain cannot do on his own. My son is very engaged socially and loves school and travel and adventure, and is like a typical tween, so we have to be available to help him at all times as he doesn’t ever want to miss a beat. Since the day he was born, where we was rushed to the NICU and spent 3 months there, followed by multiple hospital stays and ER visits, and surgeries I have been there. Organizing therapies and managing doctor appointments, ordering special equipment, facilitating playdates, planning travel, administering medications, advocating, supporting. This has been life as his caregiver, while also being a wife and a mother to an older son as well. It is a role I am proud of, and I am grateful for, but a role that is physically and emotionally exhausting.

(Photo of Brenda and Maclain courtesy of the National Post)

I became involved with Chronically Simple right from the get go. Kristy Dickinson and I had become friends through our children, and over the course of many conversations we started to identify the gaps that seemed to exist for caregivers and patients when it came to organizing and tracking their multiple appointments, and contacts, and medications and we would often discuss the burden of carrying around binders full of information.  So I made myself available throughout the creation and implementation of CS to offer a caregiver perspective on app features, and product design that might differ from things that a patient might want from CS. I continue to be involved in marketing, community outreach, development and any other aspect of CS that needs that caregiver lens.

Q: Describe Chronically Simple and how it can help caregivers to manage information? 
A: Chronically Simple is a web-based and mobile app that is a centralized hub that allows caregivers to manage all the medical information for their loved one in one secure, easily accessible location. It is basically a digitized version of the binders we all keep.

Q: Why do you think Chronically Simple is a transformative innovation? 
A: I think that Chronically Simple is a transformative innovation because it was built entirely by patients and caregivers. Every section of the app comes from a real life pain point of either a person living with a complex condition or a person caring for a loved one.

Q: What is your role in the company? How can caregivers like you contribute to product development? 
A: I have been a part of Chronically Simple from idea to conception to launch. I was able to use my experiences to build out the caregiver journey within the app and ensure that features are created that alleviate stress versus becoming just one more item on my to-do list. I am the Director of Caregiver Services. I am a part of everything that ties into caregiving – from product development to marketing to sharing my journey and how Chronically Simple has helped our family. Chronically Simple innovates based on user feedback so any user is able to share their ideas and features that they feel would be beneficial for them. This is how our roadmap is created.

Q: How will I know my information is private? Who can join? (can medical professionals be invited?) 
A: Chronically Simple worked with leaders in internet safety and data privacy & security to build out a transparent privacy policy and terms of use. The founder of the app is also a patient and a user. Security is our top priority. The Privacy Policy and Terms of Use are clear and transparent. Data entered into the app is encrypted and stored securely in Google Cloud in Canada. The primary user has control over who they invite to participate as a member of their care team. They choose who they invite and what parts of their information they have access too.

Q: What devices are compatible with the app? Do you have to be internet savvy to use it? 
A: Chronically Simple has been built to take complex problems and provide a simple, easy to use solution. There is a web based application which is accessible via Chronically Simple’s website and is the same as the mobile application which is available on Apple and Android devices. We used Kristy’s 69 year old non-technical father to test out functionality of the app to make sure it was easy for non-technical people to navigate and use.

Q: Finally, what is the cost of Chronically Simple
A: There's a special offer on now to get 6 months free. After that, it's $9.99/month or $107.99/year (reflecting a 10% discount for the yearly rate.