TO: CLCC Conference ChairsDr. Barbara Melosky, Dr. Cheryl Ho, Dr. Davin Schellenberg, BC Cancer/UBC and Dr. Randeep Sangha, Cross Cancer Institute / University of Alberta;

CLCC Executive Committee: Dr. Shantanu Banerji, Cancer Care Manitoba / University of Manitoba, Dr. Normand Blais, CHUM / Université de Montréal, Dr. Parneet Cheema, William Osler Health System / University of Toronto, Dr. Quincy Chu, Cross Cancer Institute / University of Alberta, Dr. Suzana Gilmour, BC Cancer, Dr. Glenn Goss, The Ottawa Hospital / University of Ottawa, Dr. Diana Ionescu, BC Cancer / UBC, Dr. Kevin Jao, Hôpital du Sacré Cœur de Montréal / Université de Montréal, Dr. Rosalyn Juergens, Juravinski Cancer Centre / McMaster University, Dr. Stephen Lam, BC Cancer / UBC, Dr. Natasha Leighl, Princess Margaret Cancer Centre / University of Toronto, Bonnie Leung, BC Cancer / UBC, Dr. Geoffrey Liu, Princess Margaret Cancer Centre / University Health Network / University of Toronto, Dr. Anna McGuire, Vancouver General Hospital / UBC, Dr. Frances Shepherd, Princess Margaret Cancer Centre / University of Toronto, Dr. Stephanie Snow, QEII Health Sciences Centre / Nova Scotia Health / Dalhousie University, Dr. Anand Swaminath, Juravinski, Cancer Centre / McMaster University, Dr. Ming-Sound Tsao, Princess Margaret Cancer Centre / University Health Network / University of Toronto, Dr. Paul Wheatley Price, The Ottawa Hospital / University of Ottawa, Kelly Zibrik, RN, MScN, BC Cancer

FROM: Lung Cancer BC, Patients and Caregivers Group, [email protected]

We write to ask the CLCC organizers to establish a patient, caregiver and patient advocate registration category for the 2027 Canadian Lung Cancer Conference (CLCC).

At present, the CLCC conference offers registration categories for physicians, sponsors, allied health professionals, residents and fellows, but no pathway for people living with lung cancer, survivors, caregivers or patient advocates.

This is increasingly out of step with contemporary lung cancer practice. Major international organizations, including the IASLC, explicitly include patients and caregivers within the lung cancer community and provide opportunities for patient advocates to attend and participate in scientific meetings. This reflects a broader recognition that patients contribute knowledge that is distinct from, but complementary to, clinical and scientific expertise: knowledge of treatment burden, toxicity, quality of life, access, molecular testing, clinical trials and the practical consequences of therapeutic decisions.

This exclusion also sits uneasily with the direction of Canadian health-research policy. The Canadian Institutes of Health Research (CIHR) defines patient engagement as “meaningful and active collaboration” not only in setting priorities and conducting research, but also in knowledge translation. Its Strategy for Patient-Oriented Research explicitly recognizes patients, caregivers and representatives of affected communities as partners in health research, and emphasizes that patients’ experiential knowledge should itself be mobilized and translated.

A national lung cancer conference—where Canadian researchers present findings, discuss their clinical implications and mobilize new knowledge—is precisely the kind of setting in which that commitment to patient engagement should be visible.

There is also a broader human rights principle at stake. Article 27(1) of the United Nations’ Universal Declaration of Human Rights recognizes that everyone has the right “to share in scientific advancement and its benefits.” Contemporary interpretations of the corresponding right to science emphasize not only access to the benefits of scientific progress, but meaningful participation in scientific life.

That principle has particular relevance to a lung cancer conference. Scientific meetings are places where emerging evidence is communicated, debated and translated into clinical practice. People living with lung cancer are among those most directly affected by these developments. Yet without a patient or caregiver registration category, they are positioned primarily as recipients of scientific knowledge rather than participants in the community producing, interpreting and applying it.

This matters particularly in Canada, where patients encounter issues specific to our health care system: provincial differences in access to therapies and molecular testing, reimbursement decisions, clinical trial availability, geographic inequities and delays in access to innovation.

We therefore ask the CLCC organizers to establish, beginning with the 2027 conference:

A Patient / Survivor / Caregiver / Patient Advocate registration category;

A substantially reduced or complimentary registration fee;

access to scientific sessions and appropriate conference activities;

Consideration of patient representation in future conference planning and programming.

This need not require an elaborate new program. A clearly identified registration pathway and a modest allocation of patient and caregiver registrations would be an important first step.

A national conference devoted to improving lung cancer care should make room not only for those who study and treat the disease, but also for those who live with it.