ALLINEX

Using Technology to Improve Clinical Care

Project Start date: 1st January 2010

Anticipated End Date: Now closed to recruitment (December 2012), writing up process commenced.

UKCRN Portfolio Number: 8981

Website (click here)

Aim/Objective:

To develop and undertake preliminary evaluation of an intervention for follow up of survivors of allogeneic Haemopoietic Stem Cell Transplant (HSCT): using the internet as an information exchange between patients and secondary/tertiary care.

Method:

Phase one – Patient Study & Service Evaluation.  Patient study in Leeds – Patient completion of psychosocial and quality of life questionnaires; structured interviews; retrospective examination of medical notes. Service evaluation of existing practice in Leeds, Sheffield and Newcastle HSCT units by interview.

Phase two – Phase two – Development of an easy to access secure website for allogeneic HSCT patients called ALLINEX.  Content and layout informed by patients, carers and health professionals working with HSCT patients.

Phase three – Randomised pilot study of standard care versus standard care plus access to ALLINEX website. Patient completion of quality of life questionnaires, technology usage questionnaire, website feedback questionnaire, service usage questionnaire system usability scale, tracking of activity on the website, retrospective examination of medical notes, audio-recording of medical consultations.

The Team

Principal Investigator – Dr Penny Wright

Macmillan Principal Research Fellow and lead of the Applied Informatics and Cancer Care (AICC) research team

Room L3.141, Level 3 Bexley Wing, St James’s Institute of Oncology, St James’s University Hospital, Leeds LS9 7TF

Tel: 0113 2068488

Email:  e.p.wright@leeds.ac.uk

 

Co-Investigator – Dr Maria Gilleece

Director Haemopoietic Stem Cell Transplant Service, Level 3 Bexley Wing

Dept Haematology, St James’s Institute of Oncology, St James’s University Hospital, Leeds LS9 7TF

Tel: 0113 2068433

Email: maria.gilleece@leedsth.nhs.uk

 

Research nurse – Mrs Beverly Clayton

Applied Informatics and Cancer Care research team

Level 3 Bexley Wing, St James’s Institute of Oncology, St James’s University Hospital, Leeds LS9 7TF

Tel: 0113 2067644

Email: b.a.clayton@leeds.ac.uk

 

Funder – Macmillan Cancer Support.

Contact: Macmillan Cancer Support

89 Albert Embankment

London

SE1 7UQ

Tel: 020 7840 7840