Visual Impairment Scotland Report
Chapter 2 Development of the VIS Notification System
Elements of an ideal notification system
An ideal notification system should fulfill the following aims and functions:
- To be comprehensive and up-to-date.
- To be effective at disseminating useful and practical information.
- To provide clear and immediate benefits to parents and children.
- To facilitate research.
Under the terms of the Data Protection Act of 1998 VIS was required to seek consent from parents and children before retrieving and storing any medical and educational information. To comply with the Act, VIS had to develop a complicated ‘paper chase’ involving health and educational professionals as well as parents.
Before launching the new model of notification ethical clearance had to be sought from the Scottish Multi-Centre Research Ethics Committee (MREC) and Local Research Ethics Committees (LREC). Clearance from the LRECs took over a year to achieve and required over 42,000 sheets of paper.
2.1 Elements of an ideal childhood visual impairment notification system
An ideal notification system would fulfill the following aims and functions:
To be comprehensive and up to date by identifying:
- All children with significant visual impairment
- The causes of visual impairment
- All additional disabilities
- Where the children live
A key function is to be able to identify the full spectrum of children with significant visual impairment regardless of age, the causes of visual impairment, whether they have any additional disabilities and where they live. This aim is more likely to be achieved by allowing a broad range of professionals to notify eligible children including ophthalmologists, optometrists, orthoptists, paediatricians, teachers and social workers. Regular feedback to notifying professionals of the benefits of a comprehensive notification system and complementing this with cross-discipline educational courses will reinforce the value and continued worth of such a system. By engaging with a wide range of notifying professionals the system can ensure continued notification of the widest spectrum of children with visual impairment and hold up to date information.
To effectively disseminate useful and practical information
A notification system should be able to provide up to date and relevant information both to service users (parents and children on the register) as well as service providers. Dissemination of national and local profiles of information to social, educational and health care professionals to maintain integrated and effective service provision.
To provide clear and immediate benefits to parents and children
Parents will be more motivated and more likely to agree to notification if they know there are tangible benefits from doing so.
To facilitate research
Data held by the notification system should be accessible to researchers in the fields of visual impairment including rehabilitation and education.
Based on these key points VIS aimed to develop a new notification system which meets these requirements.
Introduction of the revised Data Protection Act in 199839 has led to more explicit laws surrounding issues of retrieving, storing and identifying patient information. The practical issues that this Act raised for the VIS project included:
- An obligation to secure the consent of a child’s parents before collecting and storing any personal identifying and medical data.
- No means to directly access mailing lists of children and their parents acquired by other organisations and individual professionals.
These legal requirements created a challenge: How to effectively obtain consent from parents to ‘open the legal door’ to retrieving educational and medical information
The unique feature of the VIS model of notification is that it is parent-led. Most other models have been professionally driven, such as the current BP1 system in Scotland and the notification systems of Denmark and Sweden. In contrast the VIS model turns the notification process around and seeks notification from children and parents. Raising awareness of VIS amongst parents and children and ultimately gaining written consent presented significant challenges. The initial strategy employed was to contact all:
- Heads of Special Education Services in each Local Authority
- Community Paediatricians in every Health Board area of Scotland.
The were approached to ascertain:
- The number of children with visual impairment they provided services for
- Whether they would be willing to take part in the VIS project by forwarding consent forms to parents and later completing data collection forms.
These professionals were chosen as it was felt that they were most likely to:
- Be able to identify most of Scotland’s children with visual impairment
- Be able to disseminate consent forms
- Have sufficient knowledge about the children to be able to complete data collection forms.
The response from both groups of professionals was uniformly encouraging although several education authorities raised administrative concerns over the time required to complete education data collection forms.
The VIS Introduction Packs
VIS Introduction packs were sent to educational and paediatric professionals in the expectation that they would be forwarded to the parents of children with visual impairment that they serve. The VIS Introduction Pack included:
- Two leaflets both aimed at explaining the VIS project but with one aimed at children and the other at parents.
- A consent form with an attached notification document seeking details of the child’s visually impairing condition and professionals currently involved with the child.
When a completed consent and notification form is returned to the VISoffice, two data collection forms are sent out:
- Education data collection forms were sent to Heads of Service.
- Health Professional forms were sent to the child’s family doctor, eye department and community paediatrician.
The project is dependent on the usual providers of care and education forwarding and completing many forms for VIS. To promote and encourage co-operation a Scotland-wide series of collaborative meetings was organised. The aims of these meetings were to discuss the purposes of the project and to identify contacts to distribute packs as well as to complete and return data collection forms. There was an educational component to these meetings highlighting topical issues relevant to childhood visual impairment. Considerable effort was made to ensure these meetings involved as many of the likely providers of childhood visual impairment services as possible including:
- Community and Hospital Paediatricians
- Ophthalmologists and Orthoptists
- Social Service and Blind Society staff
- Members of relevant Voluntary Organisations
It was interesting to note that at several of these meetings professionals who were providing services to common children met each other for the first time. This highlights the incomplete communication between services and lack of integrated service provision in some areas. The meetings however often initiated useful discussion that has since lead to improved collaborative working. This has been a recurrent and major (as well as unanticipated) benefit of the VIS project.
Before launching the new model of notification ethical clearance had to be sought from the Scottish Multi-Centre Research Ethics Committee (MREC) and Local Research Ethics Committees (LREC). Clearance from all the LRECs took over a year to achieve and required over 42,000 sheets of paper. A letter of concern was sent to the Scottish Executive regarding the length of time it took to gain clearance as well as highlighting the cost and wastage of paper involved.