WP1 Mapping the care pathway
This work package will develop a standard and internationally transferable methodology to map the typical Huntington’s Disease (HD) patients clinical care pathway through the system, from pre-diagnosis to end-stage, with a particular focus upon the community care systems. ]
Clinicians will be recruited for semi-structured interviews along the various points of the care pathway (GP, OPD, etc.) and exemplar patient types (vignettes) will be developed to aid the mapping process.
WP2 Mapping the patient/family journey
This work package will develop a standard and internationally transferable methodology to map the patient/family journey through the healthcare system/disease during the disease lifespan.
The patients/families voice and experiences of living with the disease is central to this work package. Whilst the exact methodology will be developed at the outset of the project it is anticipated that patients/families will be recruited for interview and asked to complete a „living diary‟ and engage with PhotoVoice methodology for 3 months. This is to capture their real world experiences and reduce recall bias. They will be purposefully sampled so as to represent various stages of disease progression – exemplar personas will be developed.
WP3 Connected Health
This work package will work with the data from WP1 Mapping the care pathway and WP2 Mapping the patient/family journey, to identify key stages of disease progression where and what Connected Health (CH) interventions may facilitate optimal patient care and well-being, paying particular attention to the community setting.
This work package will work with the data from WP1, WP2 and WP3 to calculate the:
- economic cost of the current care pathway and patient journey pathway (patient borne costs)
- novel technology enabled care pathway and patient journey pathway (patient borne costs).
Time Driven Activity Based Costing will be the guiding methodology used due to its accurate patient level costing results.
WP5 Bring your own device (BYOD)
This work package will develop a methodology to collect and analyse data generated from participants personal Connected Health devices (Fitbits, smartphone apps etc.). This method of data collection and analysis requires the participant to provide data collected on devices they currently use. This is an innovative methodology and has huge potential going forward.
WP6 Ecosystem integration
This work package will oversee the integration aspect of the study and be responsible for combining the various outputs at study conclusion. This work package will also be responsible for incorporating the outcomes from this study into the Huntington‟s Disease international clinical ecosystem already in place.
This work package will bring key stakeholders from the academic, the clinical , the patient ) and industry together to transfer knowledge and strategise how to integrate this project into the broader HD/RD ecosystem, policy and clinical practice. The leaders of this WP will be central to ensuring the impact of this project has meaningful, far reaching and long lasting effects in the most suitable space.
Having this four stakeholder represented and working together to meet similar aims will facilitate the necessary knowledge exchange to meet the project outcomes and to ensure a shared culture of research and innovation.
The work page covers the technical coordination and project management of the CareHD project and includes coordination of all scientific, financial, legal and administrative aspects.
The dissemination and exploitation of the results of the CareHD project is vital to ensure that it can achieve the desired objectives. A framework dissemination strategy and a structure for the development of a communication plan aimed at achieving high impact will be developed. They will be updated annually and reported on within the project periodic reports. A final summative report will include detail on all dissemination, exploitation and communications activities.