Access to new treatments and drugs

April 2014
Access to new treatments and drugs - how you can help your
patients?
Canadian Skin Patient Alliance
Common Drug Review: now includes patient experiences
Before the Common Drug Review (CDR) provides a recommendation to list on public formularies
in Canada, their review now includes a Patient Experience Submission which must be supplied by a
registered patient support organization. The Canadian Skin Patient Alliance (CSPA) is the registered
patient group in Canada that submits these reviews for new dermatological medications.
Patient experience submission ≠ clinical efficacy or QOL data
It is important to recognize that the patient submission does not include clinical efficacy data
(which is your domain and is submitted by the manufacturer). Rather the CDR asks us to provide
the patient voice - how patients experience their disease and how it impacts them, and how
treatments have helped address their issues and have helped them in their lives. Please note that
while there is minimal overlap with questions the Quality of Life (QOL) data, that data and our
submission are viewed separately and apparently weighted differently by the CDR.
Your role is key to access patient feedback
Without your support and assistance we struggle to access the patients who have been prescribed
a drug under review to request their feedback. We want to respect patient privacy, yet we do know
that patients taking drugs off-label or via a clinical trial are the only ones who can give us the
feedback that will form the patient submission. The CDR and PCODR give registered Patient
organizations like ours a short window of time (typically 15 days) to collect patient experience
information and generate a report.
Three (3) steps towards aiding your patients have new treatment options
1. FORWARD: When you receive an email or hard copy questionnaire* (postage paid) from our
office, please take the time to forward them to the targeted audience mentioned in our
letter to your office team.
2. ENCOURAGE: Your patients trust you. Please explain to them the impact they can make and
the benefit to providing honest feedback: patient safety and better treatment options for all.
Encourage them to participate.
3. FOLLOW-UP: five to seven days after sending the packages, please follow-up and/or send a
reminder email to the targeted group to incite their participation.
* Please note that the questionnaire corresponds directly to the questions laid out in the CDR
template. The information will be confidential and we will not contact a patient unless they have
given us permission.
The CSPA thanks you in advance for your help. With your efforts and ours, patients in Canada will
be able to access more treatment options via public and private formularies.
For CSPA info, email us: [email protected]
For CADTH info refer to http://www.cadth.ca/en/products/cdr/patient-group-input for a detailed
explanation and a sample of the template that we will use in our submission.
Editorial Board /
Conseil de rédaction
National editor/
Rédacteur en chef
Charles W. Lynde, MD
Markham, ON
Executive director /
Directeure générale
Chantal Courchesne
Ottawa, ON
Regional editors /
Rédacteurs régionaux
Robert Jackson, MD
Ottawa, ON
Paul Kuzel, MD
Edmonton, AB
Benjamin Barankin, MD
Toronto, ON
Ian Landells, MD
St. John’s, NL
G. Daniel Schachter, MD
Toronto, MD
Marc Bourcier, MD
Moncton, NB
Catherine McCuaig, MD
Montréal, QC
Victoria Taraska, MD
Winnipeg, MB
Peter R. Hull, MD
Saskatoon, SK
Kathleen Moses, MD
Ottawa, ON
Catherine Zip, MD
Calgary, AB
Statements and opinions expressed in the CDA eBulletin reflect
The Canadian Dermatology Association eBulletin is issued monthly as a
the opinions of the authors and not necessarily the CDA. The
CDA does not assume responsibility or liability for damages
arising from errors or omissions or from the use of information
forum for Association news, information of interest to members and for
or advice contained in the CDA eBulletin articles or letters.
L’Association canadienne de dermatologie publie chaque mois le
members’ opinions. Please notify the Executive Director of any change
in address.
bulletin électronique en tant que forum de nouvelles de l’Association,
Les textes et les opinions publiés dans le bulletin électronique
de l’ACD reflètent les points de vue de leurs auteurs et non pas
nécessairement ceux de l’ACD. L’ACD ne peut être tenue
responsable des dommages qui pourraient résulter d’erreurs ou
d’omissions reliées à l’utilisation de renseignements ou de
conseils inclus dans les articles ou lettres apparaissant dans le
bulletin électronique.
d’informations qui pourraient intéresser nos membres, ainsi que pour
recueillir leurs opinions. Prière d’aviser la directeure générale pour tout
changement d’adresse.
CHANTAL COURCHESNE
EXECUTIVE DIRECTOR / DIRECTEURE GÉNÉRALE
425-1385 rue, Bank Street, Ottawa, ON K1H 8N4
Tel: (613) 738-1748 / 1-800-267-3376 | Fax: (613) 738-4695
[email protected]