The RUDY study: using digital technologies to enable a research partnership

Abstract

Patients have extensive experience of their disease that can enhance the design and execution of research leading to significant innovations and efficiencies in the research process. The research community on the whole have been slow to adopt practices that enable patients to become active partners in research. Digital technologies are providing the means to do this more easily and so are increasingly being used to interact with patients and involve them in the design and execution of research. The RUDY (Rare UK Diseases of bone, joints and blood vessels) study’s pioneering approach applies a custom-developed electronic platform where patients can contribute information over time about their disease experience, lifestyle and clinical history. This is combined with a state-of-the-art Dynamic Consent model and a commitment to patient-driven research, to further our understanding of rare diseases. This paper describes the RUDY study and the benefits that have been gained from adopting this partnership approach to research.

Equitable Participation in Biobanks: The Risks and Benefits of a “Dynamic Consent” Approach

“…While several projects already use Dynamic Consent [e.g., RUDY ( 50 ), CHRIS ( 42 ), PEER ( 51 )], further evaluation is needed to gather real-world data on its influence on the participant experience, people's understanding of the research endeavor, and their sense of oversight and control. Within Dynamic Consent, consent choices are carefully set out to allow granular decision-making and tailored involvement.…”

Authentication of Patients and Participants in Health Information Exchange and Consent for Medical Research: A Key Step for Privacy Protection, Respect for Autonomy, and Trustworthiness

“…At the time of registration, it is necessary to check that the person trying to register is a research participant, e.g., that they have a rare disease. In RUDY, patients provide information about their healthcare institutions or doctors, and researchers make inquiries to check this is accurate (Teare et al, 2017 ). Participants can also be authenticated by uploading a medical certificate or sharing their medical records with researchers.…”

“…In rare disease research, several initiatives have used a new approach to providing patient-centered information. One of these is RUDY, a study in rare diseases of the bones, joints, and blood vessels organized by a research team at the University of Oxford, which uses a patient portal (Teare et al, 2017 ) that allows patients to enter their own information online. It also recognizes and collects subjective clinical phenotypes or health data that have not so far been examined, but will become important data.…”

Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project

“… viii The NHS could adopt an online ’dynamic consent' platform, 35 which allows participants to make choices about data-usage over time. But this might widen inequality between more and less engaged/tech-savvy patients/families.…”