RareLikeMe:
. Contribute to Clinical Communications, Build Community
by Debo Harris FCA - BuckStop Media
#RareLikeMe: NHSHackDay Team
Patient Experience - Problem
1
Don't know what you don't know
Unfamiliar and often confusing to take on chronic condition tracking - young adult (genetic)
2
Personalized Engagement -v- Isolation
Need tailored patient experience, offering custom health tips and connecting users with similar health goals.
3
Reward-based Retention
How to motivation to complete regular and consistent logging of daily symptoms, good, bad and ugly
“I need an engaging way to take over/ start and continue to track daily symptoms as part of a simple routing”
“I feel isolated with this, not that many people share my particular experience”
“I’d like a quick and easy way to get my GP up to speed with what’s been going on…”
Clinicians’ universal dilemma - Problem
1
Address different clinicians seeing same patient over length of cre
Capturing the patient story, repeating information
2
Consistency & Comprehensive data
How to incentivise patients to complete regular and consistent logging of daily symptoms, good, bad and ugly
“I need a way to see the calender of all/ daily symptoms” Neurourgeon, NHSHackDay
“I often only hear about the bad days” MEH Ophthalmologist
“New assigned to this patient, I don’t have the backstory…” Sarcoidosis Clinician, Royal Free, UCLH
RareLikeMe: Patients
#RareLikeMe is an innovative App that helps patients:
regularly track and record clinical symptoms, health & wellbeing issues for their rare disease
build and contribute to a global community of others with their rare disease
reduce feelings of isolation and lack of information
support self-advocacy when interacting with clinicians (GP / outpatient appointments / inpatient discussions)
by leveraging technology and connectivity. Our app aims to build a strong and supportive health-focused community, fostering knowledge sharing and mutual support. Contribute to Clinical Communications, Build Community
RareLikeMe: Clinicians
#RareLikeMe is an innovative App that helps patients:
regularly track and record clinical symptoms, good, bad and ugly
request samples/test and track compliance
Printed summary to support getting up to speed when interacting with patients (GP / outpatient appointments / inpatient discussions)
App features: Overview of key features and functionalities
Health Tracking: Users can monitor their daily activities, including steps, calories, and workouts.
Community Connect: Join health challenges and engage with a supportive community for motivation.
Rare disease Information: Receive tailored health tips and suggestions based on individual preferences.
Sample submission requests: Track and log requests for diagnostics (eg sputum samples/ blood glucose etc).
User Experience:
User Experience:
User Experience:
User Experience:
User Experience:
Roadmap: Timeline for Development, Launch, and Future Enhancements
1
Development
Building the core functionalities and features - mobile native app
Medical Technologies Evaluation Programme (MTEP) /potential govt funding
UCL Partners (AHSC)
2
Launch
Introducing the app to the ICS/ NHS
Beacon, Genetic Alliance
3
Future Enhancements
Continual improvements addition of new features
The development phase will focus on building the core functionalities and features of the app to ensure a robust foundation. The app's launch will involve introducing it to the target user community, creating anticipation and excitement. Future enhancements will include continual improvements and the addition of new features to maintain engagement and relevance.
Thank you!
Any Questions