Interview with Angelica Frithiof

How did you first get into patient advocacy?
Because of my own experiences as a patient. I was originally approached by a Professor at Uppsala University in Sweden in 2001 who wanted me to give a speech on the patient’s perspective on telemedicine at a conference that took place that summer. My first reaction was to tell him to ask someone else – anyone else! I’d never given a speech in English before and I was terrified! But in the end I gave a little speech about patients and ethics in telemedicine and it went down very well.

And how did that lead to working with the EHTEL Association?

Well, after Uppsala I was asked to participate in a workshop and met people like Dr Russell Jones and Mats Larson. They told me about the organisation and encouraged me to get involved in running a group focusing on patient’s issues, so I did!

What would you say has been the group’s best achievement so far?

I would say it is our “Patients’ Charter” because it gave us the chance to put patient issues on the eHealth agenda properly and opened lots of doors for the group to communicate our position to a wide audience at lots of international events.

What are the group’s aspirations for the coming year?

Well, the Position Paper we’re publishing in Cork is very important for us because it creates the basis for building on the Patients’ Charter by looking in much more detail at issues like homecare, self-management and e-consultation. We can really go into more depth on things like this.

This year every major conference and event has the patient or the citizen as its focus, what do you think of this?

Well, I think that these conferences don’t really have much choice in the matter – it’s not a voluntary decision but a politically correct one. I’m not convinced that those in charge really want patients to have a bigger voice or more influence.

Why do you say that?

Because giving patients real power would, I think, destabilise the political status quo. Patients are doing so much for themselves right now – using the Internet to search for information about their treatment options, moving across national borders to find better or cheaper healthcare. We’re taking more and more power over our own healthcare and it’s like a tidal wave that threatens to drown the establishment. Politicians realise this and as a result I think that they and others are far too ready to speak for us, to try and pretend they know what we want and that they have our best interests at heart. I’m really critical of people who stand up and say “I’m for patients”. Everyone wants to talk for the patient – its time they let us do that for ourselves!

When you’re not working with EHTEL, how do you keep busy?

I have a successful private consultancy practice that trains doctors and nurses in communication skills and healthcare ethics. I also have a big extended family and two lovely children – a daughter of 17 and a son of 14½. Oh, and we have a French dog!

What do they think of what you do?

I think they’ve very proud! And being a consultant I can plan my own time and spend it on the things that are meaningful for me and make me happy. My personal business plan is only to do the things that make me joyful.

Where do see yourself one year from now?

Producing films! I’d love to start making documentaries on healthcare issues.

What are you reading at the moment?

"The Corrections" by Jonathan Franzen – I can thoroughly recommend it.

And what’s the last film you saw?

"Lost in Translation" – it was absolutely wonderful.

Where you most like to visit?

South Africa – I’ve never been and everyone tells me it’s the mot beautiful place in the world.

(Interview conducted by phone by Ben Stanberry, Editor-in-Chief and Board member of EHTEL, April 2004).