Patient-Led Research Hub

[Joan Tu]

I would like to share a resource that I have recently been told about called "Rare Disease Research Network" which is affiliated with the Cambridge Rare Disease Network. I have just subscribed to the mailing list and my knowledge about this platform is limited, however I am interested by the concept of a patient-led research hub. On the website it says "This model turns the current approach to identifying new research opportunities on its head." This may be a place to find matches with researchers and opportunities for research ideas.

[Chris Johnston]

Many thanks for the heads up Joan!

I found their site: https://www.camraredisease.org/ and really love their patient passport initiative which I will share with a couple of rare disease communities to which I belong

I also found the Patient Led Research Hub: https://plrh.org/ which accepts rare disease research ideas from patients if backed by advocacy organizations, and attempts to connect them with funders and researchers. It’s actually more patient-initiated than truly patient-led, but I’d love to see something similar in Canada though I haven’t seen anything yet.

That also led me to Learning for Involvement a relatively new UK site acting as a hub for learning resources for patient partnership (also known as patient and public involvement in the UK). What I love about their approach is that it allows anyone to recommend a link to an existing resource, which should allow their database to grow rapidly.

Again I’d love to see a Canadian equivalent - if anyone knows of anything similar to either of these sites please post a link

[Donna Rubenstein]

@Joan-Tu - thanks for sharing and @Chris-Johnston for the followon links .I am intrigued by the UK Resource hub - especially with the novel approach of community posting . Unusual for a govenment or academic group....I look forward to wandering through it, and get a sense of content and how it works..This would be a great model for other countries. imagine that leading to a national hub of health research projects ...need to breakdown the provincial and org barriers

[Joan Tu]

@Chris-Johnston Thanks for the resources. I will try engaging with them. I am concerned about the requirement to have backing of advocacy groups. There isn’t a single one for allergic contact dermatitis. The only organizations that I have found related to my condition are run by healthcare professionals and are either not aligned due to their own interests, or do not respond. The main reason I think is that patients with this condition have interest in avoidance and prevention so we generally do not rally around activities related to therapies.

[Joan Tu]

@Chris-Johnston I found a course on Learning for Involvement website for reviewing research which I think is worthwhile to highlight on this thread. The link for the course is here: https://www.learningforinvolvement.org.uk/an-interactive-course-for-new-and-experienced-patient-public-reviewers-of-health-and-social-care-research/scormcontent/index.html#/

[Chris Johnston]

@Joan-Tu It is a shame about the advocacy group requirement - I suspect that's just a volume management measure, but a deterrent nonetheless.

Have you tried an umbrella organization such as the Eczema Society Canada - while their board has medical professionals, their executive director is a mother of children with eczema, and they list allergic contact dermatitis as a sub-type.
https://eczemahelp.ca/about-eczema/types-of-eczema/

Just an idea!

I saw the reviewers course too - it's on my to-do list!

[Joan Tu]

@Chris-Johnston Thanks for the suggestion. After exploring the offerings of many eczema organizations, including the one you mentioned, I have found that my perspectives are not well-represented by any of them. The National Eczema Association raised a fair amount of awareness about “seven types of eczema” over the last few years. However, more recently I feel this is used to bolster their position to receive more pharma funding, by including all these different types of dermatoses under the “eczema” umbrella. Since allergic contact dermatitis is relatively under-researched, I do not believe there is evidence to treat it as though it is any more similar to atopic dermatitis or a type of “eczema” than any other condition with skin manifestations like celiac disease or a food hypersensitivity. While some people with contact dermatitis have difficulty identifying or avoiding allergens and rely on medications, I follow a philosophy of paring down products to avoid allergens, so prefer to work with environmental medicine organizations like ASEQ which is largely focused on multiple chemical sensitivity. I would even prefer allergic contact dermatitis to be entirely separate from dermatology in a prevention-oriented specialty and so have avoided involvement with any derm or skin patient organizations. Sorry to overexplain however I strongly support more patients involved and more diversity of patients because I cannot rely on current patient organizations to represent my views.

[Chris Johnston]

@Joan-Tu Perhaps it might be worth approaching ASEQ about the possibility of collaborating on a research proposal then, especially if they’re more aligned with the nature of the research idea.

I’m not familiar with ASEQ, but wouldn’t worry too much if they don’t particularly fit in the advocacy category. I think the requirement to have a supporting group is primarily to reduce the overall number of submissions to a manageable level.

[Joan Tu]

@Chris-Johnston Yes, there may be some possibility to collaborate with an environmental health group or one that focuses on chemical sensitivity like ASEQ. Thanks for the suggestion.

[Chris Johnston]

@Joan-Tu @Joan-Tu While searching for something entirely different in ResearchGate I came across a literature review on allergic contact dermatitis.

It occurred to me that you could search the site for recent papers on the topic and look to see if any of them are aligned to your interests. If so, message the lead author to see if they've got any other research under way, or if they'd be interested in supporting a research proposal to the hub.

You may have already considered this, but thought it couldn't hurt to mention it as an idea.

[Joan Tu]

@Chris-Johnston Thank you. I do keep up with the literature however none of the researchers or clinicians reply other than the students who tend to only publish on allergic contact dermatitis in passing. I run the Facebook page “Contact Dermatitis Allergy Eczema Canada” to keep track of articles of interest and share them with others. Eventually I may want to do more when I have more time and resources.