Global Genes Patient Advocacy Summit: The Power of Information In the Hands of the Patient
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Information is power, and when you're managing a rare or chronic health condition, having access to all of your health information in a way that is easy to understand and share becomes critical. In this presentation, we cover: • The reasons why you want to have access to your health information • Using the Power of HIPAA to get copies of your medical records • How technology has advanced (and continues to advance) making it easier to access and share records • The high-tech and high-touch approach to connecting people and data • The results of connecting people and data to redefine the role of the patient and improve the healthcare experience for everyone.
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Global Genes Patient Advocacy Summit: The Power of Information In the Hands of the Patient
- 1. Connecting People, Connecting Data
- 2. Patients Need to be the Center of Care
- 3. Healthcare Data is Fragmented
- 4. • Data is fragmented among various health systems that don’t communicate with each other • They are not family or collaboration-focused • They’re only as good as what is in them – it’s typically just pieces of a health record Patient Portals are Limited • People aren’t using them!
- 5. • 70% of referral/specialist appointments lack any information from the referring provider • 80% of diagnoses can be made with an accurate Inefficient Visits & Unnecessary Tests health story • People lack effective ways to share “between visit” data from vitals trackers and wearable devices
- 6. Healthcare Can Be Better
- 7. Connecting Patients with Data
- 8. Because of HIPAA, you have a right to get a copy of your medical records. • Who can request records? • How long will it take? • What will it cost? • What do I do if my provider doesn’t comply? Getting Medical Records
- 9. You got your medical records...now what? Organized Records
- 10. Paper Records & Binders
- 11. 1st Generation Personal Health Records
- 12. Patient Portals
- 13. Mobile Personal Health Record
- 14. mHealth Apps
- 15. Getting to Connected People & Data
- 16. Visits become more meaningful when people and data are connected Better Visits, Better Care
- 17. The CareSync mission is to connect people and data to redefine the role of the patient and to create a better healthcare experience for everyone. Connecting People, Connecting Data
- 18. CareSync: What We Do
- 19. CareSync: How We Do It
- 20. Health Timeline Each past medical visit is summarized into a Health Timeline that is filtered by health condition, medication, date range, allergies, provider, and more. It’s easily shared with family, providers, researchers in a meaningful format, directly from the app.
- 21. CareSync Pro CareSync Pro is the communication layer that connects organizations with the people they serve. The organization gets dashboards to monitor a patient population, reports to track trends, and the ability to equip members with tools and services to manage care.
- 22. Why this matters: • Track patient population • Help coordinate care • Aggregate de-identified data for clinical and pharma research and clinical registries • Communicate with members • Connect people and data to CareSync Pro for Rare Disease improve medical visits
- 23. Empowering Patients Improves Outcomes and Creates a Better Healthcare Experience for Everyone CareSync: Proven Results
- 24. Health Timeline
Editor's Notes
- Starting with a simple belief that in order for patients to experience better healthcare, they need to be at the center of their care. Healthcare is silo’d Patient portals are limited Referral Appointments lack Information 80% Dx don’t need tests and procedures – they need history Family input = the best input We are data generating machines – and recording it, too! PERFECT STORM – reform + consumerism + mobility
- Healthcare is silo’d
- 70% of Referral Appointments lack Information from the referring provider – the stats aren’t much better for what the PCP gets back, either. 80% Dx don’t need tests and procedures – they need history In-between visit data is captured, but not effectively shared in a way that providers can/want to consume.
- PERFECT STORM – reform + consumerism + mobility
- Getting Medical Records: The Power of HIPAA What you can get & What you can’t Who you can request for What will it cost How long will it take
- Paper – binders and banker’s boxes Not connected, not social Traditional PHRs Lots of work Google health – failed MS HealthVault Not connected, not particularly social Patient Portals I am biased, but I have had really bad experiences 40% of patients don’t know whether or not a provider has a portal Not connected, not social It’s only as good as what’s in there People aren’t really adopting them. New generation PHRs Much more social BLUE BUTTON Still a lot of work for patients –
- Paper – binders and banker’s boxes Not connected, not social
- Traditional PHRs Lots of work Google health – failed MS HealthVault Not connected, not particularly social
- Patient Portals I am biased, but I have had really bad experiences 40% of patients don’t know whether or not a provider has a portal Not connected, not social It’s only as good as what’s in there People aren’t really adopting them.
- New generation PHRs Much more social mobile BLUE BUTTON Still a lot of work for patients – not all data is in an electronic format, and they are still in charge of taking the initiative to build it. Data isn’t particularly meaningful – although leaps and bounds have been made with this.
- Wearables and tracking devices, applications – data is still relatively fragmented, but they bring in a social layer that is connecting families, friends, likeminded people, and in some cases, able to generate reports to share with doctors and other caregivers. More collaborative.
- We connect people and data with a high tech/high touch combination of web and mobile applications and concierge services. We improve patient and caregiver confidence through access to meaningful data, tools for collaboration and care coordination, and offer convenient services for appointment scheduling, tasks and reminders, and integrations with tracking and wearable devices.
- We connect people and data with a high tech/high touch combination of web and mobile applications and concierge services. We improve patient and caregiver confidence through access to meaningful data, tools for collaboration and care coordination, and convenience, with services for appointment scheduling, tasks and reminders, and integrations with tracking and wearable devices.
- We connect people and data with a high tech/high touch combination of web and mobile applications and concierge services. We improve patient and caregiver confidence through access to meaningful data, tools for collaboration and care coordination, and convenience, with services for appointment scheduling, tasks and reminders, and integrations with tracking and wearable devices.