Open meeting on patient involvement in development and safe use of medicines

place Geneva,
Switzerland

date_range 30 April
2019

OPEN MEETING ON PATIENT INVOLVEMENT IN DEVELOPMENT AND SAFE USE OF MEDICINES

The CIOMS Working Group XI is developing guidance on patient involvement in the development and safe use of medicines. An open event will be held ahead of the 3rd WG meeting to present the group’s work and obtain input from patient organizations and other stakeholders.

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About the event

  • mic 15 Speakers
  • group 250 Places
  • import_contacts 12 Topics

During the last two decades patients have increasingly been accepted as partners and experts in the development and safe use of medicines, contributing unique views on available treatment options and unmet needs. However, their voices are not always heard effectively. This is why the Council for International Organizations of Medical Sciences (CIOMS) Working Group XI is developing pragmatic points to consider in patient involvement (1st Meeting minutes | 2nd Meeting minutes).

An open meeting will be held in Geneva on 30 April 2019 to gather input from a wider public. The event also marks the 70th anniversary of CIOMS.

The meeting is open to patient organization representatives, regulators, drug development experts from industry and academia, health professionals and other stakeholders concerned with the development and safe use of medicines. Free or reduced fees apply for certain groups. CIOMS will provide a number of travel grants to support participation by representatives from patient organizations.

ASK A QUESTION OR SUGGEST A TOPIC

Your suggestions are important to us. This event is being organised by active members of the CIOMS Working Group XI. Please let us know what topics you would like to hear about during this event.

edit Questions and suggestions

Speakers

  • Hervé Le Louet

    Hervé Le Louet

    President, CIOMS

  • Lembit Rägo

    Lembit Rägo

    Secretary General, CIOMS

  • Emer Cooke

    Emer Cooke

    World Health Organization

  • Marc Boutin

    Marc Boutin

    U.S. National Health Council

  • Theresa Mullin

    Theresa Mullin

    U.S. Food and Drug Administration

  • Annemiek van Rensen

    Annemiek van Rensen

    Medicines Evaluation Board, the Netherlands

  • Kerry Leeson-Beevers

    Kerry Leeson-Beevers

    Alström Syndrome U.K.

  • Elisabeth Oehrlein

    Elisabeth Oehrlein

    U.S. National Health Council

  • Marilyn Metcalf

    Marilyn Metcalf

    GSK

  • Nikos Dedes

    Nikos Dedes

    European AIDS Treatment Group

  • François Houÿez

    François Houÿez

    EURORDIS

  • Meredith Smith

    Meredith Smith

    Amgen

  • Isabelle Moulon

    Isabelle Moulon

    European Medicines Agency

  • Kaisa Immonen

    Kaisa Immonen

    European Patients’ Forum

  • Leo Russo

    Leo Russo

    Pfizer

  • Suzanne Schrandt

    Suzanne Schrandt

    Arthritis Foundation, U.S.

  • Corinna Schaefer

    Corinna Schaefer

    German Agency for Quality in Medicine (AEZQ) / World Medical Association

Conference schedule

Registration 8:00

Registration

session

INTRODUCTORY SESSION

Chair: Hervé Le Louet

President, CIOMS

08:30

CIOMS Introduction

Hervé Le Louet

President, CIOMS

08:40

70 years of CIOMS: ethics and safety guidance to protect patients

Lembit Rägo

Secretary General, CIOMS

08:55

Patient centricity in medicines regulation: WHO viewpoint

Emer Cooke

World Health Organization

09:05

The role of patients in drug development and safe use

Marc Boutin

U.S. National Health Council

09:20

Why working with patients is so important

Theresa Mullin

U.S. Food and Drug Administration

09:35

Panel discussion

coffe break 10:00

COFFEE BREAK AND NETWORKING

session

SESSION 1

Chair: Annemiek van Rensen

Medicines Evaluation Board, the Netherlands

10:30

Overview of the proposed CIOMS guidance

Kerry Leeson-Beevers

Alström Syndrome U.K.

10:50

Patient involvement initiatives around the world

Elisabeth Oehrlein

U.S. National Health Council

11:10

How can patients advance treatments for their disease?

Marilyn Metcalf

GSK

11:30

Panel discussion

lunch 12:00

WORKING LUNCH

session

SESSION 2

Co-chairs: Kerry Leeson Beevers (1), Nikos Dedes (2)

(1) Alström Syndrome U.K., (2) European AIDS Treatment Group

13:00

Guiding principles for engagement: avoiding conflict of interest, fair compensation

François Houÿez

EURORDIS

13:20

Patient involvement in designing medicines labeling

Meredith Smith

Amgen

13:40

Minimizing the risk of medicines: how patients can contribute

Isabelle Moulon

European Medicines Agency

14:00

Panel discussion

coffe break 14:30

COFFEE BREAK AND NETWORKING

session

SESSION 3

Chair: Kaisa Immonen

European Patients’ Forum

15:00

Using patient data to evaluate the benefits and risks of medicines

Leo Russo

Pfizer

15:20

If things go wrong: The role of patients in designing and distributing alerts

Suzanne Schrandt

Arthritis Foundation, U.S.

15:40

Patient involvement in developing treatment guidelines

Corinna Schaefer

German Agency for Quality in Medicine (AEZQ) / World Medical Association

16:00

Panel discussion

16:30

Concluding session

17:00

End of open meeting

Conference will start in

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Registration

The conference price is 400 CHF

Special conference rates are available for regulators and for patient organization representatives.
Apply here to receive a discount code within 3 working days.

Registration fee: Open meeting on patient involvement in development and safe use of medicines
Registration fee
CHF400.00
30 available

Cancellation policy

The venue

CIOMS

World Council of Churches, Route des Morillons 1, Geneva, Switzerland

Recommended accommodation

Hôtel Drake Longchamp

Mövenpick Hotel & Casino Geneva

A limited number of rooms are available at a special rate at Movenpick ICC hotel in Geneva.

Please book directly with the hotel at this link up until 29th March 2019:
https://gc.synxis.com/rez.aspx?Hotel=19966&Chain=7714&arrive=4/29/2019&depart=5/3/2019&adult=1&child=0&group=GCCIO

Reservations can be modified or cancelled free of charge until 12noon on the arrival date.

GROUND TRANSPORT

To travel to the Mövenpick hotel from the airport:

  • The hotel is very close to the airport terminals.
  • The hotel provides a free shuttle service to and from the airport.
  • The hotel also provides a free day pass for the Geneva buses in case you arrive early and wish to travel around Geneva.

To travel to the meeting venue from the hotel by bus (approximately 18 minutes):

  • Collect your free bus pass for Geneva buses at the hotel reception.
  • Take bus number 28 direction “Jardin Botanique” from the main road below the hotel (on the hotel side). Get off at “Crets de Morillon”. The Ecumenical Centre is the older building next to the new Global Fund headquarters.
  • Bus times for the morning are as follows: 07:30, 07:45, 08:00, 08:15 or 08:30