CMV Action

CMV Action is a UK organisation of parents and volunteers who have come together to raise public awareness of Congenital CMV and to campaign for better prevention measures within our health service. CMV Action offer advice, support and friendship to anyone affected by Congenital CMV. They advocate for families affected by Congenital CMV and support them in ensuring that they receive the best possible service from their healthcare, education and social work providers.

CMV’s Project Manager had sought advice from a CITA volunteer, via a Tech Surgery, as the charity began to consider how to better centralise information and to use data more efficiently.  A particular CRM had been recommended and CMV’s Project Manager was looking for advice in order to take this forward on behalf of the charity.

During the Tech Surgery the CITA volunteer, John, assessed CMV’s current ways of working with and storing information and considered some issues around data highlighted by the charity. Following the meeting John provided CMV Action with a range of recommendations including advice for the charity around change planning, database solutions and operational service.  In particular John highlighted the need for the charity to be clear about why they were adopting a new system and how this would improve the effectiveness of the charity.

With regard to change planning, advice included standardising data collection via templates and trialling these before creating a Data Access Policy and working with the trustees to agree a Data Retention Policy.  These steps would help to clarify the outcomes the charity wants to achieve ahead of choosing a database.  John also encouraged CMV to consider questions around who would manage a database and how everyone would be trained.

What difference did CITA’s support make?

“John’s advice and recommendation to analytically look at the information we collect and the outputs we require from it were very useful.  Although we haven’t actioned any changes as yet, we are in a much better position to take decisions and make changes as a result of the Tech Surgery.

We intend to take further advice via CITA in terms of commissioning a new database in due course and are sure that this will benefit the charity in terms of more effectively managing our support.”