2

2

ISWP Evidence-based Practice Working Group

Data Collection Subcommittee

August 18th, 2016 Meeting Recap

The ISWP Evidence-based Practice Working Group Data Collection Subcommittee met by conference call on Thursday, August 18th, 2016 from 10:00 a.m. to 11:00 a.m. U. S. Eastern Time. This provides a recap.

Link to Meeting Recording: https://iswp.adobeconnect.com/p8prez231nc/

Next Meeting: Thursday, September 15th, 2016, 10:00 a.m. U.S. Eastern Time.

Discussion (action items in bold/underline)

1. Minimum Uniform Data Set: Status Update:

Rich provided an update to the group that since the ESS 2016, a lot of discussions was that to revise some of the wordings and some of the questionnaire with respect to the minimum uniform data set. Karen Rispin, LeTourneau University, tested the minimum uniform data survey during a May trip to Kenya and provided feedback during the June 12 Comparative Effectiveness Research Subcommittee meeting in Dublin. The questionnaire has been transformed into the Zoho database which can be accessed through the following link: https://creator.zohopublic.com/jonpearlman/minimum-uniform-data-set/form-perma/Minimum_Uniform_Data_Set/WqyHxCh5s5wAuyzEQas08XYH1HaGJGEgRYqTJkwjJqZ7H04Juv4RjfvbRGR1FQEaGjznqbnay1kfO0epVHFm6pT9u1VsuX5wWaA6

Rich added that we also have permission to use the WHO QOL BREF & DAS which is coded in Zoho Creator in multiple languages (English, Kiswahili, Romanian, Spanish and Hindi). Some of the links has been tested with our external partners. When working with Chandra from World Vision and Motivation Romania, it was noted that some of the questions and responses were not relevant to the present society and so those specific tools were revised accordingly and they will be submitted to WHO for feedback. Rich then presented the revised data set to the group.

2. Review ACCESS project

Rich mentioned that we are working with Chandra and her group from World Vision. They are looking into testing the WHO QOL in Zoho creator and so planned to have a customized data analysis report mechanism for them but in the process we were challenged by Zoho IT support to assist with. As mentioned earlier, the wordings on the metrics are being revised to make it more culturally relevant and these revised documents will be sent to WHO to make them aware of the changes.

3. Country Wide Data Collection Project

Rich provided an update that in the coming weeks, there will be a call with Motivation Romania to touch base about the progress.

4. Data Center Meeting

Members of the ISWP team met with Pitt Data Center representatives regarding the set-up of the data coordinating center for ISWP. Krithika provided an update to the group regarding the meeting. Data management and analysis activities specific to this project will utilize the University’s Health Services Research Data Center (HSRDC), a state-of-the-art computing facility. The HSRDC is specifically designed to provide a high-throughput computing platform for analysis of large, health data sets directly in a secure environment. The process is that the Data is brought in a number of ways and housedin avirtual environment.

Data loading options:

1) Read only database – HSRDC receives data set which is imported into database and provided to group(s).Never modified— original data set always. Typically create a separate database for data manipulation.

2) Data manipulation.Separate database with full read/write access and can add/delete data.There isn’t a read only data set.

Each data set would have its own database.Then the data center could pull data into one consolidated set. Less than 100 MB can be imported ourselves, assuming there is no PHI.Center offers 5 hours of data setup per data set ($55/hour after that).

People connect through avirtual desktop and by groups; access can be managed by desktop and/or group. Permissions can only be controlled at group level, not individual user. There is no limit to number of people in a group. Each has a unique email address. Will need sponsored account to address need for Pitt e-mail. Before logging in for the first time, users will need to complete one hour of privacy training.

Data dictionary describes studies and contexts, including information such as publications about data and reports related to study.

The next steps from ISWP is to have the coordinating center IRB approval and then the data user agreements. After this, initially we would have 5 data sets ready to be uploaded (3 data sets at Pitt on secure server, 1 world vision and 1 other data set from Jhpiego study).

Participants:

Deepan Kamaraj, University of Pittsburgh
Maria Toro Hernandez, Universidad CES
Chandra Whestine, World Vision
Padmaja Kankipati, SMOI
P / Richard Schein, University of Pittsburgh
P / Kristi Haycock, LDS Charities
P / Eric Wunderlich, LDS Charities (co-chair)
Nancy Augustine, University of Pittsburgh
P / Krithika Kandavel, University of Pittsburgh
Mark Harniss, University of Washington

Prepared by: Krithika Kandavel

2