Information for Quality
Information for Quality consultation
On the 1 October 2014 we will launch a public consultation on proposals for changing the way in which we collect, publish and communicate information to our stakeholders.
Running for six weeks - you will be invited to give your views on these changes by completing an online survey which will be supplemented with a consultation document clearly setting out the proposals.
If you work at a licensed fertility clinic, you will also be able to discuss these issues in detail at workshops being held in London and Manchester.
What is Information for Quality?
Information for Quality (IfQ) is a programme of work which will transform the way clinics provide information, the use to which we put that information, and how we then publish it through the website or Choose a Fertility Clinic.
Over the next 12-18 months we will review the way we collect, publish and communicate information with the sector and wider stakeholders.
It will impact on all our stakeholders, be they clinics, patients, researchers, or other public sector organisations.
Information for Quality consultation
On the 1 October 2014 we will launch a public consultation on proposals for changing the way in which we collect, publish and communicate information to our stakeholders. Running for six weeks - you will be invited to give your views on these changes by completing an online survey which will be supplemented with a consultation document clearly setting out the proposals. If you work at a licensed fertility clinic, you will also be able to discuss these issues in detail at workshops being held in London and Manchester.
How to get involved at a workshop:
We will be hosting two workshops primarily aimed at clinic staff and other professionals - on 15 October 2014 in London and 5 November 2014 in Manchester. Both one day workshops will focus on the detail of all the proposals, so stakeholders are encouraged to attend one to give views and further insight on how they might work in practice. For example, we want ot hear your views on:
- Having a clear and defined data dictionary which ensures that data collected meets a set of defined criteria so that no data is collected unnecessarily – you may have views on any data items being removed from the data set, or have views on new data that should be collected.
- A move to a single entry point system for the submission of data to the HFEA (perhaps web based) to prevent anomalous and erroneous information being submitted.
- Considering how, and what type of, patient experience information could be captured and shared.
- Simplifying the presentation of data on Choose a Fertility Clinic so that users find it easier to use information to make choices about their fertility treatment.
Further information on the agenda for the day, and the proposals we want your views on will be shared with you when the consultation opens.
How to register:
To register your interest in attending a workshop or to receive additional information about Information for Quality please email informationforquality@hfea.gov.uk stating your name, clinic number, your role at a fertility clinic and the workshop you are interested in attending.
We hope that you can attend one of these workshops as your input is very valuable to us.
Why are we doing this?
We want to make sure our information requirements imposed on clinics are proportionate and as effective as possible, so that we minimise the amount of time clinics spend reporting data and maximise the time spent with patients. At the same time, we want to ensure we hold information which is accurate, complete and meaningful to patients, donors, clinics, researchers and other stakeholders.
A recent review of the way in which the HFEA undertakes its functions and operates recommended that we continue with our plans to carry out this programme of work. Recommendation 6 states:
To reduce unnecessary regulatory burden the HFEA should proceed without delay with its planned fundamental review of information requirements, using the British Fertility Society (BFS) and Association of Clinical Embryologists' (ACE) paper as the basis for discussion, and adopting for the project an inclusive approach similar to that used successfully in the One at a Time project. The HFEA should publish the Project Initiation Document for this work by July 2013 and then make quarterly progress reports available to open meetings of the Authority. It is estimated that this will yield savings of approximately £1M.
Rather than make several small changes to our systems or processes, we are carrying out a programme of work to undertake a fundamental review of information requirements and what we do with that information.
Information for Quality Advisory Group
To help us achieve these improvements, we have set up an advisory group of sector staff and wider stakeholders, chaired by Alan Thornhill, HFEA Authority member. The advisory group will oversee the programme of work, and provide advice to the Authority on a range of strategic and operational issues at all stages of the programme. The nature of its advice will be made public at Authority meetings. The first meeting on the Advisory Group took place on 26 November 2013 and it continues to meet approximately every month.
More information about the advisory group.
What’s going to change?
We have not made any decisions about what will change. We are open to suggestions from our stakeholders. However, we have identified a number of projects which we believe will achieve the ambitions of the programme.
We recognise just how important this work is and to get it right, we need to involve and hear from our stakeholders both within the sector and further afield. We are inviting you to join and work collaboratively in sharing your perspective and knowledge and to offer guidance and advice on the following projects:
Data dictionary
Develop and define the data we require of clinics. We want to have a clear rationale for each piece of data we collect and how it is used.
Data submission
Deliver effective mechanisms for the submission of data to the HFEA. How could the way treatment information is submitted or the clinic portal be transformed to improve your experience and lessen the strain of submitting data to us?
Data outputs and reporting
Review the reports that we produce to ensure they meet the requirements of the sector and the HFEA. What information do stakeholders want readily available from the HFEA?
Website and publishing
Review the website so that we publish information for patients and the general public about licensed clinics in an efficient, accessible, transparent and balanced way. Is our website tailored to its audiences? Could the Clinic Portal or Choose a Clinic be changed to provide information in a better way?
Expert Groups
A group of experts, including licensed centre staff, will work together with the HFEA Executive to explore current issues and options for improvement relating to each project listed above. These expert groups will help us formulate advice for the Advisory Group and the Authority.
Additionally, there is a project called data transactions – its purpose is to review the way in which we hold data and how it links with other internal HFEA systems. This is an internal project and therefore we are not, at this point, consulting with the sector on this.
How can I find out more or get involved?
Each expert group has now been set up and we will be working with them and the Advisory Group to explore current issues and develop options for improvement. Once these have been formulated, we will engage and consult with you and other stakeholder groups to ensure that we make our intentions public and offer the opportunity for feedback. We will provide further details on this over the coming months.
In the meantime if you would like to find out more about IfQ, do contact us by emailing InformationForQuality@hfea.gov.uk.
Page last updated: 02 May 2014