THE CHALLENGES IN CHOOSING AN IT PLATFORM FOR A REGISTRY. lessons from AROC, PCOC and eppoc

Transcription

1 THE CHALLENGES IN CHOOSING AN IT PLATFORM FOR A REGISTRY lessons from AROC, PCOC and eppoc

2 OVERVIEW Systems we ve used Systems we investigated Positives and Challenges of each

3 OUR PROJECTS AROC: we ve already heard about PCOC: Palliative Care Outcomes Collaboration eppoc: electronic Persistent Pain Outcomes Collaboration All involve data entry, data collation, analysis and reporting similar to what Frances has discussed in regards to AROC

4 WHAT DO OUR SYSTEMS DO? We define a data dictionary for what needs to be collected at the Patient and Episode level, and further. Data Entry: allow users to enter data live into the system Data Upload: allows users to upload data created in other systems (eg emr, PalCare, etc) Data Extract: allows users to extract their own data for their own purposes

5 OPTIONS FOR SOLUTIONS KEY DECISIONS Web or Desktop Off-the-shelf or Custom Software Off-the-shelf: Commercial or Open Source Custom Software: Customise existing system, start from scratch Who can help you? In-house staff Software vendor IT Development business

6 AROC: HISTORY - SNAPSHOT Started with SnapShot A desktop application which used Microsoft Access as the database Designed for collecting data required for AN-SNAP classification AROC and PCOC data items are also able to be entered in this system Includes Data Extract function for submission of AROC and PCOC data

7 SNAPSHOT USER INTERFACE Desktop Application, multi-purpose, MS Access based

8 SNAPSHOT - ISSUES Very dated, complex and not user friendly interface As time passed by, hospital IT became increasingly sceptical of Access based solutions Single developer solution, developer had moved on so support and updates became difficult Currently, PCOC still uses SnapShot for data entry

9 AOS: AROC ONLINE SERVICES We have a hybrid solution involving: customised off-the-shelf software web version of desktop software original system for contact management Features: Data Entry: adaptation of an off-the-shelf solution Data Upload: services are able to use their own data entry system and provide a file which conforms to a predefined file format Infrastructure: custom web application built to our specification Who? the vendor of the off-the-shelf solution

10 AOS DATA ENTRY Web application, dedicated to AROC

11 AOS: OUTCOMES Positives Web based solution means no installation or updates to software for users New services can be on-boarded quickly. Less need for hospital IT approval Data is kept centrally on a UOW server, data collation is (in principle) simpler than a desktop solution For the AROC team, it is part of an integrated contact management, data management and qualification management framework

12 AOS: OUTCOMES Challenges Custom development is expensive and risky Browser support and hospitals with poor internet access are a challenge for this system AROC is responsible to keep the server up and running at all times AROC is responsible for security and stability of national data collection

13 EPPOC: PAIN MANAGEMENT eppoc had complex requirements Clinician Supplied data items Patient Reported Outcomes Complicated collection protocol, questionnaires timed around clinical events: Start of treatment pathway, end of treatment pathway Follow up of Episode

14 EPPOC: PAIN MANAGEMENT Other challenges Needed to collect identifiable data: such as patient addresses, name and address to facilitate collection of Patient Reported Outcomes Short amount of time available for finding or developing a solution

15 CLINCAPTURE, OPENCLINICA What s good about it? Free, open source, web based solution Can create and configure forms and define a data collection protocol Facility level security and very strong data auditing capabilities Focussed on clinical trials as opposed to longitudinal data collections

16 CLINCAPTURE HOME PAGE

17 CLINCAPTURE PATIENT VIEW

18 CLINCAPTURE CUSTOMISED DATA ENTRY FORM

19 CLINCAPTURE, OPENCLINICA Why we couldn t use it No encryption of identifiable data No patient reported outcomes: although can be integrated with epro systems Not quite flexible enough for our needs, particularly with a complex collection protocol Not very pretty, clumsy user experience for data entry

20 REDCAP What s good about it? Free, open source, web based solution Can create and configure forms in the user interface and define a data collection protocol Excellent Patient Reported Outcomes implementation Excellent API for creating and extracting data Facility level security, but not as well implemented

21 REDCAP USER INTERFACE

22 REDCAP PATIENT REPORTED OUTCOMES

23 REDCAP Why couldn t we use it exclusively Not designed for complex data structures eppoc has Patient, Episode, Pathway, Service Events, Questionnaires Not designed for complex protocols Questionnaires are triggered by events but require user intervention Great for questionnaires, not great for clinical data entry

24 EPICENTRE Custom written software Developed using in-house developers Windows desktop application which uses SQL Server (as opposed to Microsoft Access) Integrated with RedCap for Patient Reported Outcomes

25 EPICENTRE HOME PAGE

26 EPICENTRE: PATIENT DETAIL

27 EPICENTRE: QUESTIONN AIRES

28 EPICENTRE: OUTCOMES Positives Despite a complex protocol and a lot of data entry required, user acceptance is high Relatively easy to gain hospital IT approval due to: use of encryption (in database and in communication) application level security industry standard technologies patient privacy issues and data ownership are addressed because the hospital hosts the data low-maintenance: easy install and easy updates

29 EPICENTRE: OUTCOMES Challenges Although hospital IT approval was gained for this system, they were concerned with duplication of data entry with emr putting data into systems other than emr costs to them in terms of installation and support Compared to a web based solution, installation and updates are time-consuming for the eppoc team

30 YOU NEED A TEAM Clinical Expertise Someone who understands the clinical context Health Business / Management Expertise Someone who understands the constraints of the health system: privacy, IT, staff time, other related systems IT Expertise Someone you can understand your data and collection needs, and who can evaluate an IT system on the basis of these Data Expertise Someone who understands how the data will be analysed and reported

31 OPTIONS FOR SOLUTIONS KEY DECISIONS Web or Desktop Off-the-shelf or Custom Software Off-the-shelf: Commercial or Open Source Custom Software: Customise existing system, start from scratch Who can help you? In-house staff Software vendor IT Development business

32 ACKNOWLEDGEMENTS ClinCapture written and maintained by Clinovo OpenClinica: RedCap: written and maintained by Vanderbuilt University