iiinova — where your digital self keeps evolving

Reposted by Deb Maskens

International Kidney Cancer Coalition @ikccorg.bsky.social · 15/10/2026

🎉 Over 1,000 patients and carers have already contributed to the IKCC Global Patient Survey 2026–2027! A big thank you to everyone who has taken the time to share their experiences. 💙

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Deb Maskens @debmaskens.bsky.social · 04/10/2026

So much... Perhaps just to say that a random text or call to ask how you're doing is really welcomed. However long it's been. However fine they think you are. #cansky

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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

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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

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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.

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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

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Deb Maskens @debmaskens.bsky.social · 08/09/2026

Interesting. I broke with a patient "advocacy" group who used to edit/redact some patients' posts if they dared criticize their healthcare providers, or the care they received. In my opinion, we need all voices (+/-) to highlight the gaps, help steer pts to better care. Otherwise what is advocacy?

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Deb Maskens @debmaskens.bsky.social · 08/09/2026

Seriously? I guess I wouldn't hang out in those spaces for very long. Am always posting scientific literature, posing questions. Some groups perhaps are strictly in the "support" lane (aka "just listen to your doctor"). Not my cup of tea. @smartpatients.bsky.social is a good model

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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

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

Lake Ontario will never be Lake America

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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

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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

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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

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Deb Maskens @debmaskens.bsky.social · 01/08/2026

And if you can't be unremarkable, then at least be boring. "Nothing new, and nothing grew" is a huge relief. #cansky #survivorship #scanxiety

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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

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Deb Maskens @debmaskens.bsky.social · 22/07/2026

From a patient/caregiver perspective, the view was always that the IV saline was inappropriate. From a clinical trial perspective, yes, it was more "efficient", but could have been designed to put patients/caregivers FIRST. Patient advocates should have been involved in research design. Were not.

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Deb Maskens @debmaskens.bsky.social · 22/07/2026

Here's an example: I advocated consistently against global pharma companies designing clinical trials with intravenous placebo (saline) as control arm in the adjuvant setting (RCC). Got a whole lot of pushback, including from researchers running such trials. But some listened. 1/2

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Deb Maskens @debmaskens.bsky.social · 21/07/2026

I particularly liked your slide and comments on the downsides of advocacy. Important that this gets discussed. The pressure, bullying etc, particularly from other advocates can come as a complete surprise. We don't have to join everything, agree on everything. Stick to your values. Good slide!

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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

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Deb Maskens @debmaskens.bsky.social · 21/07/2026

Totally relate! My lovely dentist always does a good check on lymph nodes in my neck before we begin. It's a reminder... But always glad to hear nothing abnormal felt.

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Deb Maskens @debmaskens.bsky.social · 19/07/2026

Honestly this has never happened to me, where I live (Canada). I wonder if it's exaggerated in some countries? We have misinformation/disinformation for sure (hello FB), but also have trusted public health advice, greater uptake of evidence-based medicine wrt C-19 vaccines in particular #cansky

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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%.

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

Found your email and will connect! Looking forward to exchanging ideas.

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

Thank you for this thought-provoking podcast about patient involvement. Great discussion. Am currently obsessed with the notion of measuring impact of #PPI in cancer research. Beyond selected anecdotes, to provide evidence. Thoughts, ideas, anyone? Publications?

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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

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Deb Maskens @debmaskens.bsky.social · 12/07/2026

Depends very much on type of appointment and also on my perceived need for support, 2nd set of ears. If we're discussing intervention, then yes because support person needs to know what to expect too. And needs to bring me tea! #cansky

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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)

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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

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Deb Maskens @debmaskens.bsky.social · 25/06/2026

As a cis woman in the urology clinic, I've been asked about my PSA test... Hey, there's bladder and kidney patients here too -- some of us female! Posters of prostate anatomy everywhere... #cansky

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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.

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Deb Maskens @debmaskens.bsky.social · 22/06/2026

Hey Sid. There is indeed good news in that report, including "has not grown since March". Get your questions ready. Can the lesion be biopsied? Above all, don't panic. You've got time to take this step by step. #cansky

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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

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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)

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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

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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)

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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

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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)

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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

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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)

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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)

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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

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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

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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

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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

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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

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