Periodic Reporting for period 1 - CareHD (Patient Centered Connected Health Model of Care for Huntingtons Disease)
Período documentado: 2018-07-01 hasta 2020-06-30
Huntington's Disease (HD) is a monogenetic disease, meaning modification in a single gene occurring in all cells of the body. In Western countries it is estimated that 5-7 people per 100,000 are affected by HD. Currently there is no cure for the disease and effective management is key to quality of life for those who are affected. Connected Health (CH) has the ability to assist with many of the difficulties faced by HD, RD and indeed other symptom related diseases. CH can monitor and identify key intervention points on the disease progression pathway, inform and facilitate integrated care, assist with joining key stakeholders together in a shared ecosystem, assist patients and their families in terms of reducing isolation, optimise self-management and increase empowerment and self actualisation. CH can optimise scarce resources in an over stretched health care system, producing effective and efficient outcomes. The primary aim of this RISE project is to establish an international and inter-sectoral network of organisations working in collaboration on a research project which seeks to design a technology enabled patient centred care pathway which will identify how to optimise Connected Health interventions at key points along Huntington’s Disease trajectory. This project is important project because patient centred CH care for HD is under developed. The project aims to develop a new pathway of patient care based on better understanding of technology can assist patients to improve their quality of life at various key points along the care pathway.
Care HD, period one (June 2018 – June 2020) has focussed on a number of areas. Changed personnel within University College Dublin at project start delayed for 6 months until project co-ordinator was appointed. Review of the grant agreement was necessary. Clarity of topic areas and work packages was sought including scope and timing. January 2019 saw the first consortium meeting take place and work package leaders progressively appointed. Further time was used selecting project beneficiaries; academic & non-academic organisations, as well as advertising secondments after building the beneficiary group, ensuring secondees would have full support of their employer; fifteen researchers have been identified. Secondments began in March 2019, with 13 completed, totalling 53 research months.
These have contributed literature reviews, ethical approval applications, research method protocols, data collection for Vignettes development & pilot interviews. These tasks form the basis for the project to undertake key data gathering activities during period 2. There are 34 deliverables for CareHD across 9 work packages with 14 complete & a further 7 to be submitted early in 2021.During 2020, CareHD has created a relationship with ENROLL-HD - a global study of HD, having participants suitable interview subjects for CareHD. We will also leverage the experience of ENROLL-HD which is well established globally. Developing this relationship will benefit to the HD community. Other RD studies will be following progress closely to see the benefit.The project dissemination so far includes 7 events in 2019, e.g European Huntington Association Conference, Bucharest where a consortium member (Scottish Huntington Association) gave a presentation about the Care HD project entitled ‘Introduction to CareHD.' Attendees included medical professionals, patients, caregivers, family members, patient organisations and the pharmaceutical sector. Publications have also been generated, including SAGE Research Methods Cases: Medicine and Health Etain Quigley, Anne-Sophie Michel & Gerardine Doyle; Vignette-Based Interviewing in the Health Care Space: A Robust Method of Vignette Development https://dx.doi.org/10.4135/9781529735970. Other publications are Internal reports of secondees, literature reviews. Several publications have also been made available via the CareHD website (link shown below). CareHD has also enhanced careers of researchers who have taken part to date. Three secondees have been able to complete their masters theses and others have secured new roles. 2020 year has seen the impact of Covid-19. halting progress of data gathering activities. Conferences where papers were to be presented have been postponed indefinitely. Delays to data gathering have impeded the ability of the project to generate further impact.
These have contributed literature reviews, ethical approval applications, research method protocols, data collection for Vignettes development & pilot interviews. These tasks form the basis for the project to undertake key data gathering activities during period 2. There are 34 deliverables for CareHD across 9 work packages with 14 complete & a further 7 to be submitted early in 2021.During 2020, CareHD has created a relationship with ENROLL-HD - a global study of HD, having participants suitable interview subjects for CareHD. We will also leverage the experience of ENROLL-HD which is well established globally. Developing this relationship will benefit to the HD community. Other RD studies will be following progress closely to see the benefit.The project dissemination so far includes 7 events in 2019, e.g European Huntington Association Conference, Bucharest where a consortium member (Scottish Huntington Association) gave a presentation about the Care HD project entitled ‘Introduction to CareHD.' Attendees included medical professionals, patients, caregivers, family members, patient organisations and the pharmaceutical sector. Publications have also been generated, including SAGE Research Methods Cases: Medicine and Health Etain Quigley, Anne-Sophie Michel & Gerardine Doyle; Vignette-Based Interviewing in the Health Care Space: A Robust Method of Vignette Development https://dx.doi.org/10.4135/9781529735970. Other publications are Internal reports of secondees, literature reviews. Several publications have also been made available via the CareHD website (link shown below). CareHD has also enhanced careers of researchers who have taken part to date. Three secondees have been able to complete their masters theses and others have secured new roles. 2020 year has seen the impact of Covid-19. halting progress of data gathering activities. Conferences where papers were to be presented have been postponed indefinitely. Delays to data gathering have impeded the ability of the project to generate further impact.
Innovations of this project to date and expected to the end of the project:
1.Vignettes of Care HD patients have never previously been developed. 2.Mapping of the process of care from the health systems perspective with qualitative interviews with each health care professional in the care pathway 3.Mapping the process of care from the patient and care giver perspective adopting ethnographic research methods to collect data directly from such persons. 4.Using the data from 2 and 3 above to understand and develop patient level costs, to include both health systems costs and patient borne costs which has not been researched in the prior literature for this rare disease. 5.First time data to be generated on the role of connected health solutions to improve the lives of persons living with HD and their families 6.Through the innovative collaboration with ENROLL HD and merging both data sets, there is the possibility to enrich the Care HD data by creating a deeper and more meaningful data set with the combination of the Care HD rich qualitative data with genetic data and clinical data from ENROLL HD and across a larger number of countries, beyond Ireland and the UK. This will enable more fact-based inferences to be made for dissemination. 7.Dissemination of our mapping of the HD ecosystem on the Care HD website enables parties beyond the consortium to input and enhance our understanding of this ecosystem. New opportunities will appear during the project. Beyond project end we expect the new relationships forged between consortium organisations to endure. We already we see likely further software for bring your own device platforms being developed, and transferable to other RD environments. Study findings will have learnings applicable to multiple rare diseases environments. Health sector providers may better understand the challenges faced by HD patients, where timely interventions could occur to enhance service delivery, through better understanding or with the advent and introduction of new connected health solutions uncovered during the CareHD study. We expect that the balance of the project will see the dissemination of valuable materials and outputs that will enhance the lives of HD patients, provide insights for clinicians, provide better sectorial understanding of HD lived experience costs, provide greater definition and detail of the HD ecosystem, as well as providing a platform for better data collection and analysis of lived experience of HD patients.
1.Vignettes of Care HD patients have never previously been developed. 2.Mapping of the process of care from the health systems perspective with qualitative interviews with each health care professional in the care pathway 3.Mapping the process of care from the patient and care giver perspective adopting ethnographic research methods to collect data directly from such persons. 4.Using the data from 2 and 3 above to understand and develop patient level costs, to include both health systems costs and patient borne costs which has not been researched in the prior literature for this rare disease. 5.First time data to be generated on the role of connected health solutions to improve the lives of persons living with HD and their families 6.Through the innovative collaboration with ENROLL HD and merging both data sets, there is the possibility to enrich the Care HD data by creating a deeper and more meaningful data set with the combination of the Care HD rich qualitative data with genetic data and clinical data from ENROLL HD and across a larger number of countries, beyond Ireland and the UK. This will enable more fact-based inferences to be made for dissemination. 7.Dissemination of our mapping of the HD ecosystem on the Care HD website enables parties beyond the consortium to input and enhance our understanding of this ecosystem. New opportunities will appear during the project. Beyond project end we expect the new relationships forged between consortium organisations to endure. We already we see likely further software for bring your own device platforms being developed, and transferable to other RD environments. Study findings will have learnings applicable to multiple rare diseases environments. Health sector providers may better understand the challenges faced by HD patients, where timely interventions could occur to enhance service delivery, through better understanding or with the advent and introduction of new connected health solutions uncovered during the CareHD study. We expect that the balance of the project will see the dissemination of valuable materials and outputs that will enhance the lives of HD patients, provide insights for clinicians, provide better sectorial understanding of HD lived experience costs, provide greater definition and detail of the HD ecosystem, as well as providing a platform for better data collection and analysis of lived experience of HD patients.