9:15 - 10:45 amSunday, September 18
LK 308
Workshop: What Do I Want For My Genomic Life?
LK 308
Workshop: What Do I Want For My Genomic Life?
University of Nottingham
University of Nottingham
It has been argued that patient empowerment starts with patient education. Similarly, it has been argued that lay-people cannot understand aspects of their own medical data. In this context, we see an... Read more

Description

It has been argued that patient empowerment starts with patient education. Similarly, it has been argued that lay-people cannot understand aspects of their own medical data. In this context, we see an increasing volume of socio-medical research about choice, consent, safe storage, management and sharing of health data.

In the case of genomic sequencing, such debates are exacerbated, but, “[t]o oversimplify, the debate has been framed as a struggle between medical (or government) paternalism and individuals’ right to information about ourselves. […] We think the day will come when this framing is appropriate, but not until the diagnostic and prognostic capability of genomic information has been clinically validated”.

In the context of genomic information becoming available to lay-people, socio-medical research studies are making steady progress to improve comprehension and engagement, counselling and consent, information management and data sharing, filtering analysis, returning results and ongoing communication with clinicians and patients. However, ethical debates are increasing with the many aspects being revealed. The uses people have for their genomic information will continue to evolve as we learn more from genomic clinical practice and studies.

Susannah Fox reminds us that when researching a new area, we need to start from the beginning: do we have the right questions in order to hope for answers? Our workshop aims to explore precisely that territory, of people’s basic perceptions related to the highly complex genomic information. In doing this, we hope to shed some light to guide further research into this matter, and also, by extension, in lay-peoples’ engagement with the life of their complex personal health information. Stanford Medicine X offers both the ideal context and pretext for its participants to come together, everyone included, to explore this very interesting topic: “What do you want for your genomic life?”

We plan to engage everybody via a combination of activities, in order to elicit reflection, critique, or debate. We will form small groups to increase engagement and, of course, all-in debates will punctuate the workshop. We will design a range of activities and, depending on the time allocated, we will decide on the most appropriate mix. Materials (e.g. quizzes, games, “what if” scenarios, stationery) will be provided throughout the workshop, as appropriate.

Lorena is the ICEEhealth Event Director, a new track dedicated to Digital Health at ICEEfest, Bucharest, Romania. ICEEfest is one of the biggest festivals for digital technologies in Central and Eastern Europe. Additionally, she is a scientific advisor to Omixy, a cool London digital health startup and she is writing up her thesis, a multidisciplinary approach to digital health, as a PhD candidate with the Horizon Digital Economy Institute, at the University of Nottingham.

Lorena has been very involved with the international digital health community for several years, and she has engaged with, presented at and moderated sessions during various international events – Stanford Medicine X, Doctors 2.0 & You, Interface Summit 2015, amongst others - as well as interacted with several private and public organizations, for both research and business purposes. Lorena’s views were published on various Digital Health and innovation platforms: Digital Catapult Centre, nuviun, Mayo Clinic Centre for Innovation, or Medtech Engine. Her website, www.lorenamacnaughtan.com, offers more on her research, events, and publications.

Pepita Stringer is engaged in a PhD in Digital Economy, with the Horizon Digital Economy Institute, at the
University of Nottingham. Her PhD is a multidisciplinary research into people’s
attitudes towards genomic data, and straddles Computer Science, Engineering and
Medicine. She holds an MSc in Health Services Research and a BSc in
Professional Practice, all with the University of Nottingham. Previously she
was a registered mental health nurse with the NHS, and her roles included
Deputy Team Leader, and Community Mental Health Nurse. She is a PRINCE2
certified project manager, with hands-on risk assessment and change management
experience: having successfully project managed and facilitated technical,
medical and safety improvement collaborative efforts in primary, secondary and
tertiary care healthcare environments including the recent Health Foundation’s
Safer Clinical Systems Programme at Nottingham University Hospitals NHS Trust.
She has also worked as a project manager in Medicines Management Services in
Southern Derbyshire CCG and on Electronic Patient Records in Nottingham. She is
experienced in undertaking stakeholder analysis and engagement, benefits
management workshops, feedback, dissemination and updating responsibilities.

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