iiinova — where your digital self keeps evolving

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 02/10/2026

🔎 Why participate in the Global Patient Survey on #kidneycancer? The information gathered helps create education, support and advocacy programs that respond to the needs of people affected by kidney cancer. 🌍 Take part: buff.ly/7mCplWI

011

Deb Maskens @debmaskens.bsky.social · 30/09/2026

Commend this initiative to describe patient-relevant deterioration of #Qol during (and long after) adjuvant tx. See this often in #rcc #kidneycancer Were patient co-authors involved? Those with lived experience? #ppi #patientengagement #cansky

020

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 15/09/2026

Almost half of all kidney cancers could be prevented if smoking were eliminated and healthy body weight maintained. IKCC, represented by Olivier Exertier, will be joining experts at the #EuropeanParliament, hosted by MEP Tilly Metz and MEP Romana Jerkovic.

112

Deb Maskens @debmaskens.bsky.social · 14/09/2026

Thoughtful paper that promotes a better understanding of the various roles people with relevant lived experience can play in research. Requires role definition upfront. #ppi #patientengagement

011

Deb Maskens @debmaskens.bsky.social · 29/08/2026

How many times do we have this discussion in the #cansky patient and caregiver communities? Palliative care is not "giving up", it's about quality of life. Backed with evidence. Ask. @smartpatients.bsky.social

0123

Reposted by Deb Maskens

markcritch.bsky.social @markcritch.bsky.social · 27/08/2026

Lake Ontario will never be Lake America

26824

Deb Maskens @debmaskens.bsky.social · 27/08/2026

Good article. Organisations in Europe (WECAN for example) have developed rubrics, guidelines for fair compensation of patients based upon expected contribution, expertise, context. #cansky #ppi

041

Reposted by Deb Maskens

Robyn 🍁 @ladyoftheisle.bsky.social · 22/08/2026

Shop like your country depends on it, friends. Keep your money in Canada, for Canada. And keep the U.S. goods, services, and travel boycott strong, in solidarity with your fellow Canadians and American resisters ✊ Here’s Mark Carney’s statement, hot off the press. VIVE LE CANADA 🍁 #CdnPoli

1236784

Deb Maskens @debmaskens.bsky.social · 20/08/2026

So brilliantly written. Thank you for describing the many unexpected twists and turns of living long-term with metastatic cancer. And simultaneously, yes, living. Recommended reading for #cansky community. #survivorship

150

Deb Maskens @debmaskens.bsky.social · 27/07/2026

Love this: "Patient voice can sharpen study design, clarify endpoints that matter, improve communication, support enrollment and retention, and build trust across the research ecosystem" #PPI #clinicaltrials #cancer

011

Reposted by Deb Maskens

Sevtap Savas, PhD🫐 🇨🇦🍁 @savaslab.bsky.social · 20/07/2026

- How I became an advocate? - How do I advocate? - What is exciting about advocacy? - What are the downsides of advocacy? - What tips can I share with other fellow advocates? www.youtube.com/watch?v=5v83... #Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach

youtube.com

How I became an advocate!

YouTube video by svt svs

252

Deb Maskens @debmaskens.bsky.social · 17/07/2026

If ever there was a call for patient preference, this would be it. Lack of such data for FDA is no reason not to collect real-world patient experience data now. As a pt currently on IV pembrolizumab, I would give my right arm for subq alternative. 100%.

010

Reposted by Deb Maskens

Vicky Forster @vickyyyf.bsky.social · 13/07/2026

I've been following this cyclospora outbreak story (and writing for Forbes) and now would be a good time to stop eating any uncooked fresh produce from the U.S. The CDC are investigating but no source/s identified yet. Canadian fresh produce is a much better bet. Never a better time to buy Canadian

8391154

Reposted by Deb Maskens

Sid Sadler @sadlersnaps.bsky.social · 11/07/2026

Hey #Cansky ! If you didn’t know, now, we have a group message for members! We have 15 people in there now, and you can have up to 50! Looking to hopefully add more and more members so we can make this more of a community!🫶🏻 bsky.app/chat/itzxP7o

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 10/07/2026

What does “optimal” SDM look like? 💡 Our network, the Global Cancer Coalitions Network (GCCN), sets out 3 core elements in its new infographic: clinical evidence and expertise, patient preferences and goals, and biological, psychological and social context, (1/2)

121

Reposted by Deb Maskens

Deb Collyar @deborahcollyar.bsky.social · 29/06/2026

Good news! This immunotherapy cancer #patient survey now has #IRB approval. Please share w/#patients so we can learn from them. #cansky #medsky #health

041

Reposted by Deb Maskens

Sid Sadler @sadlersnaps.bsky.social · 25/06/2026

Hey paging all of #CanSky #OncSky #Cancer patients and survivors. We have a community group now we want to build on! It’s easy to join just click the link below 👇👇 bsky.app/chat/itzxP7o

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 22/06/2026

Thank you again to all that helped make #WorldKidneyCancerDay a success! As a reminder, the Emotional Wellbeing Global Symposium is available on YouTube with auto-translated subtitles: www.youtube.com/watch?v=LfO_... We're looking forward to the next #WKCD on 17 June 2027.

001

Reposted by Deb Maskens

Duncan Edmonstone @edmonstone.net · 22/06/2026

Sid's trying to build a little cancer patient/carer community here on BlueSky - why not join? #cansky #cancer

164

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 18/06/2026

We are grateful to the sponsors and partners who share our commitment to raising awareness for kidney cancer and the emotional burden of living with the disease. Check out the video below featuring Reno and Rina – a kidney love story for #WorldKidneyCancerDay. (1/2)

111

Deb Maskens @debmaskens.bsky.social · 18/06/2026

@care1project.bsky.social A great pragmatic trial that will improve the capturing of real world patient experience using ePROs, and advanced and more relevant #QoL measurements. #kidneycancer #wkcd

031

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 18/06/2026

The recording of the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium is now available on YouTube! Watch it with auto-translated subtitles: www.youtube.com/watch?v=LfO_... #WKCD

youtube.com

World Kidney Cancer Day Emotional Wellbeing Global Symposium

YouTube video by International Kidney Cancer Coalition (IKCC)

011

Deb Maskens @debmaskens.bsky.social · 18/06/2026

Two images for #WorldKidneCancerDay #WKCD Before checkpoint inhibitor. During checkpoint inhibitor treatment The Emotional Burden is real. The Quality of Life difference is enormous. Just trying to survive the Side Effects day by day. Mood is fragile at best. Honest. @ikccorg.bsky.social

021

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 17/06/2026

Want to learn more about the importance of emotional wellbeing in cancer care? Hear from a panel of experts, including psycho-oncologist Dr Cristiane Bergerot (BR), at the Emotional Wellbeing Global Symposium on World Kidney Cancer Day (18 June). (1/2)

111

Reposted by Deb Maskens

KidneyCAN @kidneycan.bsky.social · 17/06/2026

Join the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium! Patients, caregivers, and healthcare professionals from around the world will come together to discuss the emotional challenges of living with #KidneyCancer. Register: www.worldkidneycancerday.org #AcceleratingCures

012

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 16/06/2026

Join the global kidney cancer community at this #WorldKidneyCancerDay event on 18 June at 2 p.m. CEST. Register now at www.worldkidneycancerday.org #WKCD (3/3)

011

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 16/06/2026

Have you registered for the Global Patient and Carer Symposium yet? The online expert panel will address emotional wellbeing while living with kidney cancer. (1/3)

101

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 10/06/2026

#WorldKidneyCancerDay is now less than 9 days away! Looking for material to share? We have a range of campaign assets in 13 languages, many of which can be customised with your local organisation’s logo. Find them all at www.worldkidneycancerday.org/resources/ #WKCD

001

Deb Maskens @debmaskens.bsky.social · 02/06/2026

Really important #clinicaltrial opportunity for #kidneycancer patients in UK. More sites to open! Patient partners include @ikccorg.bsky.social and ARTur (FR). Will support informed decision making and further RCC research to guide patients for years to come. @care1project.bsky.social

031

Deb Maskens @debmaskens.bsky.social · 31/05/2026

Looking forward to expert discussion on RAMPART. Interesting that monotherapy arm was negative. Side effects significant in double immunotherapy, but no meaningful difference in Qol? Note: 3 grade 5 events (deaths)in Adjuvant setting. #kidneycancer #kcsm #ASCO26

001

Deb Maskens @debmaskens.bsky.social · 24/05/2026

100%. Beyond "listening" to patient perspectives (often too late to effect change). Calls for the patient voice to be fully integrated into systems, governance structures. #patientengagement #ppi

020

Deb Maskens @debmaskens.bsky.social · 20/05/2026

Today, May 20, 2026 is #internationalclinicaltrialsday. Joining patient advocate colleagues from @ikccorg.bsky.social virtually to represent the Patient Advisory Board of the CARE1 #clinicaltrial for 1st line mrcc. Recruiting in many centres across Europe. #kidneycancer @care1project.bsky.social

031

Deb Maskens @debmaskens.bsky.social · 19/05/2026

Great to see the @ikccorg.bsky.social Global Patient Survey data dissected to explore patient experience gaps in Canada, Mexico, and the US. This poster reveals concern over kidney function and yet lack of evidence-based information of how to best manage. #kidneycancer #patientexperience #AUA26

011

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 12/05/2026

The #WorldKidneyCancerDay website is now live! www.worldkidneycancerday.org (1/2)

111

Deb Maskens @debmaskens.bsky.social · 12/05/2026

Abstract looks good for #kidneycancer patients. @theaacr.bsky.social @elizsmckenna.bsky.social Any way for patient advocates to access please?

010

Reposted by Deb Maskens

Deb Collyar @deborahcollyar.bsky.social · 05/05/2026

If you are a #cancer #patient, please consider taking this 5-minute survey to help us help people live better lives. Follow this link go.osu.edu/pits or scan QR below - thanks!

133

Reposted by Deb Maskens

University Health Network @uhn.ca · 04/05/2026

There’s a global shift happening in research, and Canada is ready. Through the Canada Leads progrgam, UHN has recruited 70+ scientists from around the world, strengthening Canada’s position as a destination for top talent. More in @theglobeandmail.com: tgam.ca/3QNDopF @uhnresearch.ca

063

Deb Maskens @debmaskens.bsky.social · 29/04/2026

Fascinating project to recognize and learn from "the deep, hard-won practical wisdom that patients develop through years of living with their conditions." Applies equally well to chronic cancer conditions, long-term #survivorship #cansky #patientengagement

040

Deb Maskens @debmaskens.bsky.social · 18/04/2026

More is not More. Except when it comes to the added toxicity. #QoL #kidneycancer Thank you @yukselurun.bsky.social

120

Deb Maskens @debmaskens.bsky.social · 26/03/2026

This work in #shareddecisionmaking in #kidneycancer uncovered unique country-level barriers influencing HCPs: eg.,..."not all major treatment options were always presented, often influenced by resource limitations and financial incentives favouring surgery"

031

Deb Maskens @debmaskens.bsky.social · 13/03/2026

Fantastic international work on #shareddecisionmaking in #kidneycancer Research powered by patient evidence, HCP interviews and the passion to do more so that all patients have a voice. Well done team! @ikccorg.bsky.social @uroweb.org #EAU26

031

Deb Maskens @debmaskens.bsky.social · 04/03/2026

Tons of respect for patient advocate Joyce Graff and all she has done for the #VHL and #kidneycancer communities globally. Was instrumental with @ikccorg.bsky.social with connections around the world. Thank you @smartpatients.bsky.social

011

Deb Maskens @debmaskens.bsky.social · 27/02/2026

That third point. Amazing that it has to be said, but yes. In an era of #shareddecisionmaking, patient preferences require a thoughtful discussion of patient goals, expectations, risk tolerances. What matters most to you? #GU26

041

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 25/02/2026

At the German Cancer Congress last week, Karin Kastrati presented about the CARE1 Pragmatic Clinical Trial. We’re proud to support this important work. #KidneyCancer

011

Deb Maskens @debmaskens.bsky.social · 23/02/2026

Really an excellent example of how country-specific data within the @ikccorg.bsky.social Global Patient Survey can identify variances, gaps, and work to address unmet needs for patients with #kidneycancer I hear Canada made a similar presentation recently at Canadian research meeting. Good to hear

021

Deb Maskens @debmaskens.bsky.social · 05/02/2026

Kudos to @htaiorg.bsky.social and the Patient and Citizen Involvement group (PCIG), book editors and the many contributors. This is quite the comprehensive volume on #HTA with many global perspectives. #patientengagement #healthtechnologyassessment #globalhealth

022