Janet Addison is Senior Manager & Product Lead, Centre for Observational Research at Amgen, and an active participant in the EMIF programme. She will take part in the event “EMIF: E-managing the Future of Health Data” in Budapest, from 16th-17th March.

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“Patient data, at the end of the day, belongs to individual people. We are sensitive to that and I think having the input of an independent external ethical advisory board shows just how careful we are being, which is important for the public to know. Having convened that group and meeting with them regularly is a very big step forward.”

As Senior Manager & Product Lead, Centre for Observational Research at Amgen, Janet Addison is actively involved in Metabolic, Business Development and Sustainability workstreams and coordinates the pharmaceutical company’s various contributions to the European Medical Information Framework (EMIF) programme. Amgen is involved across the EMIF project as a whole, as the company is not only active in the EMIF-Metabolics vertical, but also contributing technical resources to help develop the platform, as well as resources from its biostatistics group and legal counsel.

“My role is to coordinate this overall contribution and to see if we can fill any skill or resource gaps,” explains Addison. “It’s an evolving role that matches the ongoing development of the EMIF project, so it’s very exciting to see how we can make a difference and help shape the project.”

A Proactive Approach to Ethics and Patient Data

Asked what progress she has found especially notable across EMIF’s work as a whole, Addison is quick to flag the scientific publications that have come from the programme “Several publications have advanced basic science, e.g. in relation to biomarkers and metabolism. I think those scientific advances speak for themselves,” she says.

She also flags the programme’s proactive convening of an ethical advisory board as worth discussing. The ethical advisory board comprises six European experts in fields of information and business ethics and law, and includes people cooperating at the highest level of public advice-giving on topics such as data privacy. “This is an area that is hugely important to the public – and it’s essential that the public knows that EMIF is handling patient data responsibly,” she says.

“Patient data, at the end of the day, belongs to individual people. We are sensitive to that and I think having the input of an independent external ethical advisory board shows just how careful we are being, which is important for the public to know. Having convened that group and meeting with them regularly is a very big step forward.”

A Push for EMIF Participants to Go Beyond Comfort Zones

Any consortium or partnership where you have people coming from a large number of countries, and from different professional and personal backgrounds, will pose the challenge of how you bring such a diverse group together as a cohesive whole. For success, “you need to get people to work outside their immediate comfort zone,” says Addison.

The upcoming EMIF conference in Budapest offers “an opportunity for people who don’t normally work closely together to get together and share,” says Addison. Scientifically, she believes it will be interesting to see the advances that have been made in different verticals. She also believes it will be encouraging to see how people are working together.

“Most importantly I think such a meeting strengthens the idea that we are all working on the same project. When you’re immersed in your work it’s easy to lose sight of the fact that you’re part of something much bigger. EMIF is working for the good of public health – and I think this is an opportunity to remind us of that, of what we are ultimately working for.”

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2018-03-07T07:48:32+00:00