Research Gaps
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Hello, I am a new member. I have not been able to find any appropriate barrier-free platforms to discuss the research gaps that I have identified, related to my condition (allergic contact dermatitis), other than social media. Furthermore, I have not been able to connect with anyone whose interests are matching and aligned with pursuing this research despite attempts to contact a few researchers.
I am unable to pursue this research myself at this time as I am in a graduate program in another field. Furthermore, I am discouraged from pursuing this research if I am not receiving any correspondence from researchers who specialize in allergic contact dermatitis. However, if I am able to find any researchers who are interested in these areas, I may be able to contribute in a limited capacity as a patient partner or as a participant. In certain instances, I may wish to have my data included in the study, and should not participate as a partner or researcher.
I would like to point out that:
✓ Patients can identify research gaps related to their illness experience.Furthermore, I have had some experiences where physicians were not aware of the role of patient partners or the Patient Advisors Network, and advised me with inappropriate deficit-based comments such as:
- "You are not qualified to be principal investigator", or
- "Why don't you do the research yourself?"
As a result of these experiences, I believe it is important to have barrier-free platforms to discuss patient-identified research gaps, where patients' interests are respected, as patients may have medical trauma, may not be able to find appropriate, aligned, or trauma-informed research supervisors or programs, or may have reasons that they cannot be the researcher or partner in a study.
The research gaps that I have identified are listed below for your information. Thank you for accepting me in the network.
Research Gaps re: Allergic Contact Dermatitis
- Accessibility issues for healthcare workers with contact allergies in healthcare settings or healthcare professionals education
- Accessibility issues for people with contact allergies in clinical settings, schools, public swimming pools, restaurants, hotels, hair salons, etc.
- Accessibility issues with home visits for people with contact allergies, visiting other people’s homes or having visitors at own home
-Stigma or challenges experienced by people with contact allergies in a clinical setting, from family/friends, or trying to communicate their illness experience, healthcare story, needs or preferences, etc. - Challenges experienced by people with contact allergies in obtaining employment or requesting accommodations at work or school.
- What are the illness experience stories of people with contact allergies? How did their allergies come about? What happened? What is the natural history?
- What genes are involved in the development of contact allergies?
- How do atopic and allergic contact dermatitis differ in involvement of the filaggrin gene?
- Which contact allergies run in families?
- What illnesses co-occur with contact allergies?
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Hi Joan
Research gaps are a large issue and I have seen that CIHR is willing to fund Priority Setting Partnerships, often James Lind Alliances in the past few years. Is there a national organization that might be able to help you by applying for funding to do this? To do priority setting I have seen that the applicants need to have patient partners to be part of the application and work on the project.
I don't have contacts in this area, and PAN is not disease specific. The 2 most longstanding Twitter accounts I know are Nottingham Eczema (@EczemaSupport) and @MarcieMom. The first one is the NHS and the 2nd is a mom in Singapore. Their interest is kids but they have been around for at least 10 years so may have some useful info.
Did you try PubMed on line, searching Canada/allergic contact dermatitis/priority setting or something similar to find the researchers?
Maybe the university associated teaching hospitals are centers of research?
Annette
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Research gaps are a large issue and I have seen that CIHR is willing to fund Priority Setting Partnerships, often James Lind Alliances in the past few years. Is there a national organization that might be able to help you by applying for funding to do this? To do priority setting I have seen that the applicants need to have patient partners to be part of the application and work on the project.
I don't have contacts in this area, and PAN is not disease specific. The 2 most longstanding Twitter accounts I know are Nottingham Eczema (@EczemaSupport) and @MarcieMom. The first one is the NHS and the 2nd is a mom in Singapore. Their interest is kids but they have been around for at least 10 years so may have some useful info.
Did you try PubMed on line, searching Canada/allergic contact dermatitis/priority setting or something similar to find the researchers?
Maybe the university associated teaching hospitals are centers of research?
Annette
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@Joan-Tu @Annette-McKinnon I have run into this situation in the research I do for organ, tissue donation and transplant. When we started to collaborate as Patient partners with researchers clinicians, etc., we made a list of what was important to patients and another list fr what’s important to researchers.
I often remind our team to go back to the list of what was important to Patients to see that we are making progress. I did check out various websites, including federal and provincial to see if there was a place for Patient priorities I wasn’t able to find one. This is the big issue because a lot of the funding that goes into research is paid for by taxpayers and Corporate donations you would think that the patient would have a voice in what research gets done. I brought this up several times with researchers to say when you think about your research question think about what the impact would be for the patient and what is your end intention. Let’s keep in touch, @Annette-McKinnon we could collaborate to see how PAN could help with this important issue. @Joan-Tu thanks for bringing to our attention.
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@Annette-McKinnon Thank you. I will look into the suggestions you mentioned. The researchers in the area of allergic contact dermatitis are usually producing publications of very narrow scope rather than looking at the disease longitudinally or in broader contexts. More work is required to fill in gaps and address industry, policy, and accessibility issues. I appreciate your response.
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@Sandra-Holdsworth Your response resonates with the challenges I am seeing as well. Significant collaboration may be required to develop patient leadership to make patient-identified research gaps a priority. Thanks for your comment.
