PPRN EHR-Extraction Project: Reflections and Projections. Dixie Baker Kiely Law Michelle Denburg Megan O Boyle

Transcription

1 PPRN EHR-Extraction Project: Reflections and Projections Dixie Baker Kiely Law Michelle Denburg Megan O Boyle 1

2 Agenda Project Overview Results What the Numbers Tell Us Recommendations PPRNs Looking Forward 2

3 Project Objective To evaluate the effectiveness and value of empowering individual participants to play an active role in making their own clinical data available for research through the use of a mobile app capable of downloading structured clinical data from patient portals and transmitting the data to a PPRN, which would extract data elements, transform them into the PCORnet Common Data Model (CDM), and load them into registries. 3

4 Project Team Interactive Autism Network (IAN) PPRN NephCure Kidney Network for Patients with Nephrotic Syndrome (NKN) PPRN Phelan-McDermid Syndrome Data Network (PMS_DN) PPRN Medfusion (mobile app vendor) Genetic Alliance Project Leadership 4

5 Functional Components & Workflow 5

6 Project Timeline Pilot: Nov 2017 Feb

7 Summary Results IAN NKN PMS_DN Metric Goal Actual Goal Actual Goal Actual Invitations Sent > All eligible 512 N/A 427 Consents Received 20% of invitations * N/A 53 Medfusion Plus Accounts Created Structured CCDA Documents Received N/A N/A 1 *Two consents were withdrawn 7

8 Drilling Down Into Results: Portal Connections PPRN Medfusion Accounts Portal Connections Connections Producing Downloads Attempts Successes % Portals % IAN % % NKN % % PMS_DN % 5 100% Many participants attempted to set up connections but either did not present correct credentials, or encountered portal challenges Around 66% of portals offered documents for download 8

9 Drilling Down Into Results: Opportunity for Simplification Connections Producing Downloads CCDA XML Documents Downloaded / Received PPRN Docs Received % Downloaded IAN % NKN % PMS_DN % Very small percentage (3.6%) of CCDA documents downloaded were successfully transmitted to the PPRNs 9

10 What the Numbers Are Telling Us 1. The PPRNs worked hard to recruit participants, and participants downloaded the app, created accounts, and attempted to establish connections with their portals. 2. Fewer than half of the attempts to establish a connection with a portal were successful. 3. About a third of the connected portals offered no documents for download. 4. Only 3.6% of the CCDA XML documents downloaded to Medfusion were successfully transmitted to a PPRN. 5. We need to simplify the end-to-end workflow in order to make this model successful! 10

11 Recommendation We recommend that any future investments in further development of this model focus on the objectives of: 1. Developing apps with simple, intuitive workflows and interfaces specifically designed to enable a consumer to contribute data to science; 2. Building robust, large-scale provider directories that will enable a consumer app to discover URLs to patient portals offering CCDA XML download, and APIs offering FHIRresource retrieval; and 3. Developing cost-effective, standards-based solutions for secure data transmission from a portal or FHIR resource server to the research network. 11

12 The IAN Experience Kiely Law Principle Investigator, Interactive Autism Network

13 Overall Impressions and Next Steps Positives: Pilot successful Data obtained is useful and usable (mostly) Negatives: Process too cumbersome Access to pediatric records has added challenges Next steps: Interested in exploring further Committed funding is needed May be helpful to focus on Patients already using EHR portals Patients from a single health care system 13

14 The NKN Experience Michelle Denburg Principle Investigator, NephCure Kidney Network

15 NephCure Kidney Network (NKN) More research ready Now able to provide both patient-reported outcomes (PRO) and clinical data at an individual level Ability to map an individual s experience of care over time Potential for comparisons across different health systems and geographic areas Clinical data can help fill in the gaps Richer source of data, and without the lag time associated with claims data One possible barrier: language 15

16 NephCure Kidney Network (NKN) Benefits to our patient community Original NKN PPRN goal: Make it easier for patients to store and share their clinical data in the registry PDFs of medical record data automatically uploaded into patients file lockers easily viewable Patients are empowered and can choose to share their data for research purposes 16

17 NephCure Kidney Network (NKN) Looking to the future: once data are more populated Cross-pollination with other networks NKN investigators are involved in multiple initiatives, e.g., Cure Glomerulonephropathy (CureGN) and the Glomerular Learning Network (GLEAN) Possibility for reverse data sharing sharing PRO data with EHR systems Helpful for patients who manage care at home, e.g. urine protein monitoring, weight and blood pressure checks Technology improvements (FHIR) will accelerate this 17

18 The PMS_DN Experience Megan O Boyle Principle Investigator, Phelan McDermid Syndrome Data Network

19 Our Population Phelan McDermid Syndrome Caused by changes to genetic material on chromosome 22 Rare genetic disease, 1,800 known diagnoses Patient Registry Voluntary participation About 1100 registrants who answer self-report questionnaires and upload genetic reports So we wanted to know: How can we help our families improve access to their EHR? What methods are most effective for our families to gather EHR data to help us under PMS over time? 19

20 Barriers Difficulty finding and connecting to their patient portal Confusion between the parent s data and the child s data downloaded when both had clinical data at the same medical facility Difficulty accessing the health data of their child over the age of 14 Limited time to devote to the project Few people entered the Direct address Hard to know who might be interested in signing up, and knowing who actually signed up. PMS_DN used clicking on the instructions as its criterion for sharing addresses with Medfusion, but some uncertainty exists as to what address the participants used. 20

21 Moving Forward and Lessons Learned Because our population is generally parents and caregivers acting on behalf of an individual with PMS, we will explore ways to overcome the HIPAA barriers for patients over 14 years old If our families participate in an project like this again, where a direct address needs to be added, that should populate automatically We will continue to use a personalized approach to recruiting families 21

22 Observation This pilot was remarkably successful largely due to the generous donation of time and resources from Medfusion and the participating PPRNs. Ultimately, significant advances toward broad utilization of this model to empower individuals to actively contribute their clinical information for use in biomedical research will require meaningful investments of time and funding. 22