Projects - Patient Engagement Scotland

Patient Engagement

This work focused on representing the interests, experiences and views of people affected by genetic disorders to the Scottish Government and NHSScotland commissioners.  The complexity and severity of many genetic diseases creates considerable barriers for some patients when trying to express their opinions to decision makers.  Therefore, Genetic Alliance UK represent the views of patients, their families and their carers to present as full a picture as possible of the reality of living with often rare, long term and chronic genetic disorders.  This post was funded by the Scottish Government as part of the Review of Genetics in relation to healthcare in Scotland chaired by Professor Kenneth Calman in 2006. 

This review asked for provision to be made for the creation of a patient network that could comment on NHS service design and delivery.  By consulting with patients and their families the Government hopes that NHS Scotland will continue into a modern, flexible service that can adapt to the great variety of individual patients needs.

What is Patient Engagement?
Patient engagement, also known as patient / service user involvement is simply a commitment by organisations such as the NHS, to talk to patients, listen to their views and use this information to improve patient experience in general.  The Scottish Government developed a policy called Patient Focus Public Involvement in 2000.  This policy stated that NHSScotland would strive to become more patient-focused and identified the following key aims:

• A service where people are respected, treated as individuals and involved in their own care.
• A service where individuals, groups and communities are involved in improving the quality of care, in influencing priorities and in planning services.
• A service designed for and involving users.

What has Genetic Alliance UK in Scotland done?

Created a virtual panel of patient representatives 
Anyone who is affected by a genetic condition or cares for another person who is, can join the virtual patient panel. The panel is an online network of patients who have agreed to be contacted to share their views on health related issues and changes in policy and practice in Scotland.  You will need to have access to a computer and have an email address to join the virtual panel, and you can do so by contacting .

The advantage of the virtual panel is that it is a quick and effective way to give your opinion and feed into surveys.  The panel is also used to advertise meeting and events of relevance and alert you to news.  Each opinion is given equal weight in a debate, and you are not obliged to comment if you are too busy or dont feel the issue is relevant to you.

Looked at services and support available for people with rare and ultra-rare genetic conditions
There is a need for a more co-ordinated approach in the delivery of healthcare services to patients who are rare and therefore few in number.  We will be monitoring output from the European Commission concerning the possibility that member states might look at designing a Rare Disease Plan next year.

We are continuing parts of this work through the role of our Development Officer.