Research Highlights Session I – Patient Invovement in Research

Speaker:

• Dr. Rona Smith
  Senior Research Associate | University of Cambridge
  Medical Director | Patient Led Research Hub Cambridge

Abstract:

“Patients understand their condition and needs better than many medical professionals do” is the motto of the Patient Led Research Hub (PLRH) at Cambridge Clinical Trials Unit in the United Kingdom.

Patients also have ideas about what clinical research would be most beneficial to their lives. However, due to the complexity and cost involved in running clinical trials, the majority of research originates with the pharmaceutical industry or academic researchers. The Cambridge PLRH presents an innovative and forward-thinking model for supporting patient-initiated and patient led research, working in partnership with patient groups to deliver clinical studies based on their own research questions.

In this talk, PLRH Director Dr. Rona Smith will present on the history, structure and processes, and successes and challenges of the PLRH since its beginnings in 2015, offering a critical and provocative perspective on issues of power, knowledge and expert status in the clinical research domain.

Speaker Bio:

• Rona Smith is a senior research associate at the University of Cambridge and an honorary consultant in renal medicine and vasculitis at Cambridge University Hospitals NHS Foundation Trust. Her research focuses on optimizing trial design. Key areas of interest are approaches to make trials more efficient, such as using routinely collected healthcare data and platform designs, and strategies to make clinical trial research less burdensome for patients, such as facilitating co-enrolment into studies, sharing data across trials and varied approaches to consent.
  Rona is the medical director of the Patient Led Research Hub (plrh.org) in Cambridge, which adopts a unique model of putting patients at the heart of research and co-producing from the outset.

Speakers:

• Isabel Höppchen, MSc
  Pre-Doc | Ludwig Boltzmann Institute for Digital Health and Prevention
• Veronika Leitner, BSc
  Patient Researcher | Ludwig Boltzmann Institute for Digital Health and Prevention

Abstract:

This presentation will give an overview of organizational processes and structures for patient (and public) involvement in research at the Ludwig Boltzmann Institute for Digital Health and Prevention (LBI-DHP), and will offer examples, experiences and reflections on “doing” patient involvement in this setting.

Speaker Bios: 

• Isabel Höppchen is a qualified physiotherapist and holds a master’s degree in health services research and implementation science. At the Ludwig Boltzmann Institute for Digital Health and Prevention, Isabel is working on her PhD in Human-Computer Interaction (Salzburg University), designing a digital cardiac rehabilitation referral assistant for patients with cardiovascular disease to support cardiac rehabilitation utilization. Isabel also lectures and supervises students in nursing science at Paracelsus Medical University, Salzburg. Isabel’s research interests and methods include qualitative research, participatory design, eHealth, rehabilitation and prevention of cardiovascular diseases, and evidence-based physiotherapy.
• Veronika Leitner is a qualified nurse and holds a bachelor’s degree in advanced nursing practice. Veronika has over 20 years of work experience in various clinical areas, including cardiology, pneumology, gastroenterology, neurology and rehabilitation, and years of teaching experience in practical nursing skills. Following a heart attack and a period of cardiac rehabilitation during 2021, Veronika joined the Ludwig Boltzmann Institute for Digital Health and Prevention in January 2022, where she is contributing to various research projects in her role as “Patient Researcher”.