Guidance released by NICE earlier this year considers how people living with Parkinson’s Disease and their carers could benefit from remote device technologies, and the clinical and cost effectiveness of the use of the technologies. Remote monitoring devices provide Parkinson’s Disease (PD) symptom data that enables clinicians to make better informed decisions about the care they provide, which in turn supports patients with improved symptom management and quality of life.
The guidance highlights the currently insufficient evidence surrounding the impact of using these devices in the NHS on quality of life of Parkinson’s patients and their carers, and a lack of clarity about how these devices affect NHS resources. Therefore, NICE recommends that more evidence is generated whilst these technologies are being used in the NHS.
To support this, NICE has released an evidence generation plan which outlines the evidence gaps and what real-world data needs to be collected for a review of the technologies again in the future.
uMed’s AccessPD Cohort is referred to in this document as a valuable resource for setting up research studies.
AccessPD: A Unique Approach to Evidence Generation
AccessPD is a novel decentralised registry and integrated clinical research platform that provides researchers with access to evidence that doesn’t exist in other databases.
NICE highlights AccessPD as a valuable data source to address the evidence gaps that exist with the use of these technologies in the NHS.
Within the context of the outlined plan, AccessPD provides opportunities to immediately commence a longitudinal parallel cohort study, for the ongoing collection of data on the use of these technologies, from a pre-consented cohort of patients with a diagnosis of Parkinson’s Disease.
AccessPD allows:
- Data beyond that routinely available: Participants within AccessPD are actively contributing data from their Electronic Medical Records (EMR), genetic tests, wearable devices used at-home and patient-reported outcome surveys. This provides access to a rich source of regulatory grade data which can then be augmented with the collection of additional custom data as required to answer specific research questions.
- Immediate data collection: The AccessPD master protocol is ethics approved, so researchers can begin collecting data immediately.
- Population-wide patient access: AccessPD comprises nearly 1000 pre-consented participants with a diagnosis of Parksinson’s Disease. The cohort is powered by uMed’s ACCESS Research Platform which is embedded across a vast network of healthcare institutions across the UK. This enables rapid and targeted identification of patients via their health record data, and engagement on behalf of their healthcare institution.
- Dedicated Patient support: For Parkinson’s Disease patients, communication and technology may be a barrier to participation. AccessPD provides a dedicated patient support team that can help participants and carers through the study process. This leads to improved participation, and representation of a wider patient population.
- Pre-consented, research ready patients: Upon invitation to the cohort, patients provide their consent to be re-contacted for the collection of additional data or participate in additional research studies. This means we can rapidly contact patients to collect additional data, without having to restart the recruitment and/or consent process from scratch.
- Alleviate pressure on study budget and staff resource: uMed facilitates device delivery and remote training, as well as data collection and aggregation, which would otherwise need to be factored into resource and study budgets.
If you’d like to discuss how uMed’s AccessPD can provide access to the evidence required for your research project please contact our team at hello@umed.io.
