Patient Group Input:The Patient Group and Advocate Perspective

Gail Attara, Chief Executive OfficerGastrointestinal SocietyChair, Best Medicines Coalition@Gail_Attara

Disclosure• I have no actual or potential conflict of interest in relation

to this topic or presentation

Nothing to disclose.

About the Gastrointestinal Society

• registered charity serving Canadians since 1976, in partnership with the Canadian Society of Intestinal Research

• as the Canadian leader in providing trusted, evidence-based information on all areas of the gastrointestinal tract, the Gastrointestinal Society is committed to improving the lives of people with GI and liver conditions, supporting research, advocating for appropriate patient access to health care, and promoting gastrointestinal and liver health

Website & Social Media

Gastrointestinal Society

@GISociety

GI Society

badgutcanada

Gastrointestinal Society

www.badgut.org

Why Do We Make The Effort?

• patients have unique knowledge, perspectives, and experiences

• we belong here

Patient Submissions Completed• Constella® (linaclotide)• Dificid® (fidaxomicin)• Entyvio® (vedolizumab)• Galexos™ (simeprevir)• Harvoni® (ledipasvir-sofosbuvir) x2• Humira® (adalimumab) • Resotran® (prucalopride)• Revestive® (teduglutide)• Revolade® (eltrombopag)• Simponi® (golimumab)• Zaxine® (rifaximin)• Zepatier™ (grazoprevir-elbasvir)

In Progress• Entyvio® (vedolizumab)• Brand TBD (sofosbuvir-velpatasvir)• Inflectra™ (infliximab)

– first mAb SEB• Cortiment® (budesonide MMX)

Our Culture• grassroots – all staff capture ‘stories’ by listening to patients

and responding• continual dialogue with patients, on the phone, at our

BadGut® Lectures, while in community, on social media• measuring, quantifying, understanding

needs of those who we serve• integrating patient perspectives in all

our activities• positive outlook on completing

submissions • never ask for funding from pharma to do

submissions, but engage them to fund some of our early-stage tools

Tools• survey, roundtable, in-person interview,

telephone interview• discussions with clinical trial physicians

leads to patients with drug experience• discussions with other physicians

regarding their patients’ anecdotal experience – leads to patient intros

• social media• build community/pharma relationships

to receive advance notice• meetings, conferences, networking• international relationships

Questions to Answer

• experience with the disease• experience with the medication• how does the medication change things?• factual vs emotional?

Get Organized

• think about your constituents all the time so you are connected with the illness well in advance

• when you hear about a potential drug – get ready • figure out what information you’ll need to collect • decide who has the information and how to collect it• recruit participants • ask your questions – find out what you’re missing• collect data; think about it – what have you really learned? • know your patient group• synthesize and report

Making it Count• patients’ experiences with drug being

reviewed • majority experiences vs. unique

experiences• pros/cons of current/standard

therapies (unmet needs) • does drug address these needs? • when patients not yet on drug – what

are their expectations for a new treatment?

• how does the condition or disease affect caregivers?

Challenges• requires lots of time/resources to develop a solid patient

input submission• collecting/assembling data• writing a concise report• limited staff or volunteer resources• contract someone? • timelines are very short – changing • often difficult to find patients who have direct experience

with a new drug that has never been on the Canadian market

Personal Toll• hearing all the diverse challenges• patients are often very sick• one patient died shortly after I

interviewed her – of the very disease that the drug was designed to help

• reinforces passion

Don’tX report on scientific evidenceX report on physician

perspectivesX repeat information – if you

don’t have much to say, keep it short

X quote product monograph X include non-patient

perspective information

Review the Summary

• take the time to review the summary• does it say what you said?• edit if it does not capture the essence of your

submission• speak up; don’t settle

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