Shared learning database
Type and Title of Submission
OPERA (Online Personal Education and Risk Assessment) Updated November 2009Description:
Update on the risk assessment tool and personalised information resourceCategory: Does the submission relate to the general implementation of all NICE guidance?
NoDoes the submission relate to the implementation of a specific piece of NICE guidance?
YesFull title of NICE guidance:
CG41 - Familial breast cancerCategory(s) that most closely reflects the nature of the submission:
Is the submission industry-sponsored in any way?
Description of submission
The overall aim of this initiative is to enable members of the public who are concerned about their family history of breast cancer, to receive online personalised information about familial/genetic breast cancer (based on the NICE guideline) which in turn will aid them to access appropriate help and advice.Objectives
1.To present accurate information about familial breast cancer and its management (based on the NICE guideline) to any member of the public who wishes to know about this. 2. To facilitate understanding of the information (and the NICE guideline) using an interactive web-based tool which gives personalised information. 3. To support the user and signpost him/her appropriately to further sources of help.Context
As advances in cancer genetic information are made at a fast pace, the demand for this complex and fast moving type of information continues to grow - much of it from people who worry unnecessarily that their risk of developing cancer is significantly above average because of a cancer in their family. Taking this into consideration, and as more people now use the internet as their primary (and sometimes only) source of information, Cancerbackup (now Macmillan Cancer Support) designed and developed an interactive risk assessment tool that provides online personalised information on familial/genetic breast cancer. Familial breast cancer was chosen as an appropriate cancer for which a tool could be developed, in response to an online survey carried out by Cancerbackup in 2004 seeking public opinion of the idea of an online risk assessment tool, the same year that NICE published its guideline for the management of women at risk of familial breast cancer. There is currently no tool that uses exclusively the criteria laid down by NICE. It was decided to develop the tool in a generic form so that it could be used as a model for the risk assessment/management of other conditions for which NICE guidelines may exist. It is intended that the tool will also be seen by healthcare professionals as a reliable source of information to which they can direct patients (or patients can self-direct) to facilitate subsequent discussion and decision-making.Methods
OPERA was developed using the expertise and services of healthcare communication specialists and software developers from the University of Lugano, Switzerland. Dr Andrea Pithers, Genetic information Manager (former Cancerbackup) worked closely with Dr James Mackay, Consultant Clinical Genetic Oncologist and Senior Lecturer of the Department of Biology at UCL to develop the specification and information content of the tool. The program presents personalised information using the rules of the NICE guideline. It offers much information and signposts to many options for support and advice. Approval was obtained from London MREC (multi-centre research ethics committee) to run two pilot studies. Adverts for volunteers were placed in London Metro, Cancerbackup and Macmillan websites, The Guardian, Evening Standard, several London Breast Screening Units, as well the Cancer Service Collaborative Improvement Partnership. Volunteers within easy reach of London were first recruited - allowing easy access to Dr James Mackay, should anyone need genetic counselling after using the program. However, as some volunteers did not follow-up after their initial interest, it was decided to allow other interested volunteers outside the London area to take part. Access to Dr Mackay was still available to the new volunteers. Volunteer feedback was constructive and positive, enabling the program to be improved before public usage. The tool was launched on 22 April 2008. Volunteers who participated in the first pilot study were invited to use the tool 'under observation' and to give immediate feedback on its usability and their personal reactions to the outcome of the assessment. These volunteers were then contacted with a postal questionnaire approximately 1 month and 3 months after using the tool to assess their longer term reaction to the information received.Results and evaluation
In the second pilot study, volunteers were asked to test the tool in their own homes through a pre-booked password-enabled 'web appointment' and were contacted by telephone within 48 hours of using the tool to assess their immediate reaction. Postal questionnaires were then sent in the same way as described in relation to the first pilot study. These pilot studies gave an opportunity for the volunteers taking part to help shape the overall development of the initiative as their comments were used to improve and enhance the tool before it was launched in its final state. The University of Lugano produced a report showing a summary of volunteers' feedback from the second pilot study, using feedback from the telephone interview, and the 1 month and the 3 month questionnaires. The main results showed that the users were glad they had used OPERA and considered it an important tool; they found it easy to understand and use; OPERA decreased worry and anxiety, more markedly in low-risk users; volunteers who were in the 'high-risk' category stated they were seeking doctor's advice post-OPERA. OPERA has been presented at two international conferences and following one of these presentations, a paper for the journal Patient Education and Counseling has been written. Please refer to Patient Education and Counseling 67 (2007) 261-266 "Online Patient Education and Counselling: Project OPERA from Cancerbackup. Putting inherited breast cancer risk information into context using argumentation theory." Mackay J, Schulz P, Rubinelli S and Pithers A. Ongoing usage is monitored by Macmillan Cancer Support, with online reports from Google Analytics. These reports include monthly number of visits, average time on site, percentage of new visits, and traffic sources. A more in-depth report developed by the University of Lugano can be accessed, and this gives a summary of the answers for each OPERA question.Key learning points
1. Translating the rules in the NICE guideline into a comprehensive set of rules for a piece of software was a huge challenge. The software has been written generically so that some of these challenges can be avoided if a similar piece of software is developed for a different subject/guideline in the future. 2. It was important to have a timeframe with target dates but all members of the team had to remain flexible to be able to deal with all unforeseen challenges/problems. 3. Listening to the advice and opinions of those for whom the tool is intended (ie members of the public who are likely to use the tool) was essential from the start of the project. 4. Good teamwork and communication was essential throughout.
This submission was shortlisted for the 2011 Shared Learning Award.
|Organisation:||Macmillan Cancer Support|
|Address:||89 Albert Embankment|
|Phone:||0207 840 7868|
|Fax:||0207 091 2201|
NICE handles personal information provided to the Institute in accordance with the Data Protection Act 1998. Find further details in our data protection policy.
This page was last updated: 21 January 2010