Overview

Background

The REACH project team are building a database of people affected by asthma (those who have asthma, and parents/carers of people with asthma) who are willing to be contacted by researchers, to help put researchers who are looking for participants for their studies in touch with people who are keen to participate.

REACH (REgister for Asthma researCH) is a team working within Asthma UK Centre for Applied Research (AUKCAR), which sits in  the  Usher Institute of Population Health Sciences and Informatics

From the REACH section of the AUKCAR website:

We are building a database of people affected by asthma (those who have asthma, and parents/carers of people with asthma) who are willing to be contacted by researchers, to help put researchers who are looking for participants for their studies in touch with people who are keen to participate.

This project will build and implement an application to process registrations from members of the public who are affected by asthma to participate in research studies. It will also build and implement an application for REACH staff to manage the registration data.

REACH had previously approached Applications Division to develop this system, but the timeframes which we were able to offer were not satisfactory, so they recruited external web design company MTC to carry out the work. Unfortunately, this project was not a success and although some stubs of the form and backend were delivered, nothing substantially useful was implemented.

REACH have now asked Applications to develop the ‘back end’ of the system, and LTW (WGI team) to implement the ‘front end’. This means that Applications and LTW (WGI team) will have to collaborate closely to deliver a joined-up and successful product.  Project Management will be provided by Applications.  REACH have already agreed costs and payment terms for the elements of delivery provided by LTW (WGI team) therefore this proposal does not include the estimation of effort or cost for LTW’s deliverables.

Due to the previous difficulties, work is now behind schedule for REACH. They have been given funding for this project and ideally would like a functioning product of some sort by August 2017 to demonstrate to funders. This would put them in a stronger position for the next funding round.

Therefore, a bare-bones minimum viable product (MVP) should be identified, and work on this should be expedited in order to achieve quick delivery.  Further releases of the system will follow to provide the remaining functionality.

Extensive work has already been carried out by REACH to document the following:

• IGC                          Information Governance Checklist
• IGRR                        Information Governance Roles and Responsibilities
• DPSCP                    Data Protection and Security Code of Practice
• SLSP                        System Level Security Policy
• CAPTIGNA              Confidentiality Audit Procedures & IG Training Needs Assessment
• RA                           Risk Assessment
• IAR                          Information Asset Register
• BCP                         Business Continuity Plan
• IGIP                         Information Governance Improvement Plan

This project should be aware of this documentation and ensure that work done is in compliance; or that these documents are kept in step with the system design.

http://www.ed.ac.uk/usher

Scope

The project will create a public-facing website (front end), the primary purpose of which is to deliver a registration form for people affected by asthma to register for participation in research studies. This site will be hosted on a new Drupal platform separately from the existing AUKCAR site, and will be prominently linked from the REACH section of AUKCAR. It will have a similar look and feel to the AUKCAR site.

In addition to the registration form, the following supporting features are required in the front end:

• A form for researchers to start an application for access to registration data.
• Information such as contact details; what to expect once registered; how to remove yourself if you change your mind; details of data privacy/security; etc.
• CMS features to allow REACH admins to edit the supporting information as required.

The front end should not store registration data directly (i.e. in the Drupal database), and instead should interface with the back end database in a secure manner.

The project will also deliver a separate secure web application (back end) to manage the registration data. This will provide authorised REACH staff with the means to maintain the data.

The back end will be secured with EASE and available to specified users only. Access will therefore be limited to users with EASE accounts.

In addition to maintaining the data, the back end must also provide features to search, sort, and export the data. It must deliver a means to export data in a pseudonymous format, i.e. with personal identifiers removed from the dataset, with a separate ‘key’ document which can be later used to identify the data.

There is also a desire to implement more sophisticated features in the back end, such as ‘projects’, which can support research study workflows and track how records have been used.

Out-of-scope

• Providing similar facilities for the PPI registration/database. This may be considered at a later date.
• Accepting registrations from members of the public from outside of the UK.

Objectives & Deliverables

Benefits

Faster and lower cost route to finding volunteers to help with future research projects

Success Criteria

Number of people who sign-up to join the register

Easy to use - so no barrier to getting new users to sign-up for the new services

Low error count / failure rate when users submit the form to register with the service

Easy to support and administer by the Reach team

Project Milestones

Attachment	Size
Snaphot of Milestones as of 15/09/17	57.55 KB