Through ongoing work with Lifeblood: the Thrombosis Charity and its work with patients and carers affected by VTE several needs have emerged that the TRADAlliance would hope to address:
1. Access to information and mutual support for those affected by VTE.
2. An opportunity to share their stories with healthcare professionals to inform the holistic care needs of patients.
3. A desire to contribute to the research agenda of future clinical studies.
4. Partnership working with researchers and health professional in managing VTE care.
5. Opportunities to support others affected by VTE.
The First Steps: The Virtual World of the TRADAlliance
The first goal for the TRADAlliance is to develop a web based virtual Alliance between healthcare professionals, researchers and patients. This will form the hub of the Alliances work with key areas being:
Patient Specific Areas
Patient involvement is key to the work of the TRADAlliance. To date all projects have been developed with patient representation on the research group or in response to patient suggestions. Sadly the nature of incurable disease means that many of our patients are only able to contribute to the alliance for a short time. The alliance will allow people with life limiting illness and VTE to connect with other through the virtual alliance.
Current patient specific areas of the website include:
Resource centre with patient information leaflets and links to other areas of interest
Patient stories room where those affected by VTE can upload their stories to share with other patients and health professional to highlight areas of clinical and personal care that need addressing for those affected by VTE.
Research ideas pages where patients and carers can suggest research that they feel needs to be done in the field of VTE and advanced disease including quality of life studies, and patient narratives.
Professional Specific Areas
Robust research and evidence based knowledge is only as good as its dissemination. The web site would aim to provide a Continued Professional Development (CPD) resource for professionals as well as a resource centre for VTE related research.
The e-learning skills developed through the Cardiff University Palliative Medicine Course would be used to provide ongoing education which will be augmented by the patient narratives which will contextualise the pathophysiological processes of VTE.
Research Specific Area
This would be password protected for health professionals whom have registered their palliative care unit as an Alliance Member with a view to contributing to future research projects within the alliance. It will also house the Thrombosis Registry of Palliative and Hospice patients (TROPHY) which will be a prospective database of advanced cancer and non-cancer patients with VTE.
This database will identify current practice and clinical outcomes within the palliative care settings in order to better understand the natural history and clinical sequelae of VTE in palliative care. It will also highlight the main areas of clinical difficulty faced by professionals in this setting.
An additional arm of this database will be to identify the quality of life sequelae of VTE in advance disease which will be linked with the patient story archive.