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‘Unprecedented resource’

Cancer patients directly informing work of public research group

How can we support people affected by cancer in Newfoundland and Labrador?

A woman with grey hair, black glasses and a gray suit stands six feet apart from a bald man wearing a blue shirt, denim jacket and brown pants in front of a glass wall in a building foyer.
From left are Dr. Sevtap Savas and Doug Smith.
Photo: Rich Blenkinsopp

How can we best design research and public engagement activities that suit the unique needs of our local communities?

One exciting idea is by working with the individuals and families directly affected by this disease.

That is why we, a team of Memorial University researchers, an oncologist, an Eastern Health administrator and two community members, have led the way to the creation of the Public Interest Group on Cancer Research.

Diverse representation

Our team recruited 12 public members, who comprise a diverse and inclusive group with representation from across the province.

Four of the health authority regions (Eastern, Western, Central, and Labrador and Grenfell health regions); men and women; individuals with or without a family history of hereditary cancers; individuals self-identifying as having a disability; individuals with different ethnicities including Indigenous members; ages ranging from 18-66; rural and urban areas; and individuals who have either been diagnosed with cancer and/or have a family member diagnosed with cancer are all represented. In addition, 14 different cancers are being represented and advocated for by the group members.

Our team is dedicated to giving a voice to communities and to individuals and families affected by cancer in Newfoundland and Labrador.

This work will enable effective research, public engagement and educational events, and advocacy activities that are directly informed by patients and families.

Group members’ ideas and thoughts demonstrate just how challenging cancer is and why we all need to come together to help those affected in our local communities.

Needs and priorities

The Public Interest Group on Cancer Research will be an unprecedented resource for not only understanding the needs and priorities of our communities, but also for designing, conducting and spreading the findings of research studies.

A couple members have already agreed to be community partners in a provincial cancer research study. Their enthusiasm is truly inspiring. Local investigators who would like to consult the group can contact Dr. Sevtap Savas and Dr. Holly Etchegary.

As this interest group exemplifies, when community members, researchers, health care administrators and providers come together, the value of the work gets bigger, more meaningful and more gratifying.

The team thanks the many public members who submitted applications to serve in the group. The team would also like to acknowledge Dr. Farah McCrate, Eastern Health, as one of the group investigators. 

This public engagement activity is funded by the Office of Public Engagement at Memorial University, and supported by the Faculty of Medicine and NL SUPPORT.

This article is authored by Dr. Sevtap Savas, Division of Biomedical Sciences, Faculty of Medicine, Memorial University; Dr. Holly Etchegary, Clinical Epidemiology Program, Community Health and Humanities, and patient engagement lead, NL SUPPORT, Faculty of Medicine, Memorial University; Dr. Teri Stuckless, Cancer Care Program, Eastern Health, and Discipline of Oncology, Faculty of Medicine, Memorial University; Rebecca Roome, community member; and Doug Smith, community member.

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