Rae Martens ♿️

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One thing we aren’t doing in 2026 is ai accounts posing as therapists giving information on autism.
www.instagram.com/p/DVkebtmleA...

Just moved my writing from LinkedIn to Substack!
Why giving engagement feedback takes practice and share concrete tips for making feedback more meaningful and actionable from a lived experience perspective. patientpartnerresources.substack.com/p/giving-eng...
#patientengagement #familyengagement

Canadian families feel the ripple effects of decisions made as well. That makes the role of science communicators vital as we move forward. /3

As a Canadian I recognize my positionality is different in this context. Still engagement and strong science communication are essential for building trust with communities.
/2

Autism researchers rebuke Kennedy, form independent advisory group A group of autism researchers and advocates are forming an independent advisory body to develop a scientific agenda for the autism community.

It’s important to see this kind of pushback. Research priorities are part of the conversation but meaningful involvement of autistic people and their families need to be part of it too. /1

www.statnews.com/2026/03/03/a...

Rae Martens Rae MartensWriter, Science Communicator, Coffee Drinker

This blog offers practical suggestions for both organizations and individuals to create supportive environments that prioritize emotional well-being, provide preparation and debriefing, and acknowledge and repair harm when it occurs.
www.raemartens.ca
#patientengagement #familyengagement

New directions in measuring family-centred service: the updated measure of processes of care (MPOC 2.0) To develop an updated Measure of Processes of Care assessing parent/caregiver perceptions of the family-centredness of service providers’ behaviour.Researchers and parent partners conducted a two-p...

Best team ever to work with.
We co-created the update of a survey that asks parents how family-centred their child’s rehabilitation care feels.
The new version works well and better reflects clear communication, coordinated care, and support for the whole family

www.tandfonline.com/doi/full/10....

Oh wow this is gorgeous work! Sincerely thank you for sharing it! I look forward to digging in and sharing it elsewhere!

I see a copious amount of videos about “stop saying you’re doing your own research!”. It’s a message that’s beginning to move well beyond the point of saturation when we don’t move the conversation to next steps. People need to be ready to hear about studies and know what to do with them.

A word that’s worth knowing in this day and age.

Happy to! Thanks for all that you do!

Yes with one of the Senators. You can read the bill here: www.parl.ca/LegisInfo/en...
The next link is a multiple organization initiative to stay in the conversation. www.inspiringhealthyfutures.ca
My initial involvement was due to disabled kids and the CRPD were missing from the bill language.

a voice in the work should it move forward. In the case of this child though we have a lot of work to do here. I’d be rather eager to see some active work at the intersection of public health and religion. Something needs to change. /2

We have also a national child and youth strategy currently in the senate but I’m not overly confident it’s going anywhere in the current climate. It’s more of an intention rather than a detailed plan. But have been prepping on the side to ensure that kids can access their right to having /1

I’d defer to Florence for a lot of this information. What I can bring is a perspective from the monitoring side of those rights. (UN CRC and UN CRPD as they intersect.) We have a serious education gap within the community when it comes to accessing those rights as well which is also a barrier.

WHAT IS YOUR STORY? Protecting Your Story A guide for people with lived experience sharing in research and conference spaces. Patient Partner Resources

A practical guide for people sharing lived experience stories in research or healthcare spaces, focused on setting boundaries, protecting your wellbeing, and choosing what to share with intention.
#patientengagement #familyengagement

patientpartnerresources.substack.com/p/protecting...

DICES-L Common Spectrum of Emotions and Themes Patients and Caregivers Experience in Partnership 1 Discovery Of the benefits of the practice of partnership, new opportunities and new skills and a supportive community. Empowerment Approaching the concept of partnership with confidence and feeling supported. Building familiarity with the responsibilities associated with partnership. 2 Investment The decision to effectively "buy-in" and commit to partnering. This is entertained with each new opportunity to partner, offering a unique decision tree that contemplates whether or not to commit to a project. 5 Sustainability Ongoing self-assessment of one's capacity and readiness to either continue to partner or cease to do so after a personally determined period of time. Catharsis Wishing one knew about the idea of research partnership sooner. Discovering a meaningful connection to the work. Surprise regarding one's confidence and the discovery of new skill sets. Leadership Validation of lived experience prompts a desire to find further training in research or within the social movement of growing the practice of patient-oriented research. Cite This Framework: Martens, R., & McGuire, K. (2026). DICES-L: Common spectrum of emotions and themes patients and caregivers experience in partnership [Conceptual framework].

DICES-L is a framework that recognizes partnership as a journey, not a one-time event. Many people with lived experience partner in research more than once.
DICES-L names common phases people may so researchers and partners can better anticipate, flag, and support needs at every stage.

PSA
In Alberta you now need to sign up to get public health advisories for your area. It is not clear to me if there will be regular media-social media public health announcements outside this process.
See link:
www.alberta.ca/publi...

Is your name Family Engagement? Because when we work together, amazing things happen.

Are we conducting a partnership model? Because our connection just feels so mutually beneficial.

Are you a community-driven research project? Because I’m ready to invest in our shared outcomes. /3

Are you a lived experience advocate? Because you just made my heart feel heard.

Are we collaborating on a participatory study? Because together, we bring the best results.

You’re the lived experience to my research; without you, I’d be incomplete.
/2

Some #patientengagement and #familyengagement Valentines for your weekend.

Are you a community-based participatory researcher? Because you know how to make every voice count.

You must be a knowledge user, because together, we’re making a real impact.
/1

On #IDWGS, we honour Dr. Kirsty Duncan, a scientist, leader, and lifelong advocate for fairness and representation in research.
Her work helped create lasting change in Canadian science, opening doors for women and underrepresented scholars. Her impact continues.

According to the CMA survey, people who followed health advice from AI were five times more likely to experience harm than those who did not.

What to do with this information? You are more complex and nuanced than the
rectangle in your hand. Proceed with caution.

This is what responsive disability policy looks like. They have a lot of work ahead to build the trust of families. But shout out to all the families who put in years of hard work to get there.
The move towards needs based funding rather than diagnosis based is where provinces should be heading.

Tumbler Ridge is a small planned resource community, a winding 90 minute drive from the nearest city of at least 10,000 people.

A massive number of people are going to descend there tomorrow.

May those that arrive have respect and grace for the unimaginable grief.

This is one example of bipartisan agreement from the survey on who is responsible to take action.
Nearly all Canadians surveyed believe that the responsibility to curb the spread of false health information falls to:
GOVERNMENTS (90%)
SOCIAL MEDIA PLATFORMS (87%)
Image from @cma_docs

Plain language abstracts can help reduce misuse of science Plain language abstracts will be a significant step toward helping those who want to understand research.

“To help reduce the misuse and misunderstanding of current science, scientific research needs to be explained in language the public can understand.

One method to do this would be to ensure that the conclusions of research are publicly accessible.”
www.statnews.com/2026/02/03/m...

Ten Years of Progress in Patient Engagement: A Foundation Built, But Time to Deliver - PubMed It has been 10 years since the Advisory Panel on Healthcare Innovation Report (Advisory Panel on Healthcare Innovation 2015) recommended patient engagement and empowerment as one action to enhance the quality and sustainability of healthcare in Canada. Since that time, patient engagement has become …

Ten Years of Progress in Patient Engagement: A Foundation Built, But Time to Deliver - PubMed pubmed.ncbi.nlm.nih.gov/41601445/

Sir Ian McKellen performing a monologue from Shakespeare’s Sir Thomas More on the Stephen Colbert show. Never have I heard this monologue performed with such a keen sense of prescience. Nor have I ever been in this exact historical moment.TY Sir Ian, for reaching us once again.
#Pinks #ProudBlue

Me: Why have headache?
Brain: You no drink water!
(Pause)
Brain: We go drink water now?
Me: After one more scroll.
Brain: Then headache stay. As lesson.