What do researchers owe us?
It's easy to get around online privacy controls. Is it okay to do so?
A quick aside: If you’re a US citizen, here’s your reminder to make sure you know how to vote in your district, which is trickier than normal this year. National politics aside, your local politicians can have a huge impact on your daily life.
If the person you’re providing care to is a US citizen and needs assistance voting, they’re entitled to those accommodations. Disability does not automatically prevent people from voting — anyone who is able to express a preference for one candidate over the others remains qualified to vote.
Okay, moving on…
My great-uncle taught art for a k-12 school system. When he died he left a treasure trove of art supplies and books, along with the more eclectic accumulations of a hoarder. As the other artsy weirdo in the family, and as someone with plenty of free time, I sorted the wheat from the chaff in his over-stuffed house.
Among many folders of student work, I found one where he’d had elementary students complete an ambiguous outline drawing of two figures. Students had colored in the picture and depicted the figures interacting in various ways, from ballet performances to bloody stabbings.
I was a community college student at the time, so I decided to recreate this experiment and analyze how the depictions had changed. It was the first time I obtained Institutional Review Board (IRB) approval for a project. I then recruited an elementary school teacher and obtained written permission from the legal guardians of each participating student.
More recently, quantitative research methods was a required course for my MA in Corporate Communications. As part of my class I needed to conduct an online survey, which required IRB approval.
An IRB is meant to ensure research is done in a way that protects people’s rights and welfare.
Universities in Canada and the UK have Research Ethics Boards (REB). Australia and New Zealand have Human Research Ethics Committees (HREC). Other countries have different acronyms, but you get the idea.
So, it was a bit of a surprise when Jonathan Moroney, the chair and professor of industrial design at Kendall College of Art and Design of Ferris State University, told me class work doesn’t require IRB oversight.
What ethical protocols do design and business students follow when conducting research?
Recently, someone joined our private peer support group for young caregivers. He told us his father had a life altering disease and he was struggling to find ways to help his parents while away at college. He asked for advice on how to set up his parent’s house to reduce his dad’s risk of falling before an upcoming surgery that would reduce his mobility.
On another website he posted a notice recruiting participants for a research study on fall prevention, identifying himself as part of a team that included two universities developing a product as part of their industrial design and entrepreneurship programs.
I removed the student from the group and reached out to the IRBs of both universities.
I let the group members know what happened and we discussed how to maintain a safe space.
I figured that was the end of it.
I was taken aback when I got the email from Jonathan Moroney, who I hadn’t contacted, informing me that the work done by his students doesn’t meet the legal definition of research.
They are attempting to connect with people who may be experiencing the problem they are trying to solve to understand their perspectives and insights. Their research is not intended to contribute to the generalized public or professional knowledge about the subject matter.
…
This type of qualitative research method is frequently and commonly used within business and design schools. It does not violate our standard practice for ethical research based on the guidelines presented by our institutional research team. The same can be said for the GVSU guidelines. Research conducted within classroom exercises for the purposes of design (product development) does not require IRB oversight.
The student research he’s overseeing is research, but it’s not research research and therefore isn’t covered by federal regulations.
He said he’d remind students to follow group rules in the future.
Every day I get messages from students, researchers, and product development teams asking for help recruiting participants for surveys, interviews, and beta testing.
Up until a few weeks ago, Bob or I would verify that they were approved by an ethics committee and then let the relevant group know. Recently, we decided to no longer assist with research recruitment. I updated our policies and shared the changes in all of our groups.
It hadn’t occurred to me that anyone would join a group without disclosing their intentions and use the conversations within the group as their data source.
I’m sure it’s a total coincidence that Spectrum Health Innovations, the medical device company where the student is interning, was awarded a $727,000 grant from the City of Grand Rapids, Michigan to support the development of new health care solutions.
The project funded by this grant is in partnership with KCAD and GVSU. It’s overseen by the same professor who reached out to me.
“Our classes will feel like an internship,” Moroney says. “They will have more of a professional experience, as if they were part of a company preparing to launch a new product. But whereas many students might have a challenge in gaining access to context and experts, by working with SHI, we won’t have that problem. That’s the strength of this program—the students will be able to work directly with technicians, managers, charge nurses, therapists and other staff around the hospital.”
The experience will open pathways to medical careers for students while developing innovative medical devices to solve real-world health care problems that will benefit many.
Moroney’s students have unique access to experts. They also have no lack of access to caregivers.
FSU and GVSU have 38,700 students and 2,360 staff.
Spectrum Health has 12 hospital facilities and provides both home care and long-term care. They have an online CareCircle tool to help families organize support.
Spectrum Health runs caregiver support groups for families impacted by stroke, ALS, Parkinson’s, Alzheimer’s, and other conditions.
I wonder if the student’s mother participates in a support group?
Does she think those conversations are private, like we thought ours were?
Maybe her son will come up with innovative solutions like his predecessors have.
Spectrum Health Innovations hosted a report out where Luke presented a home health solution to a group of Spectrum health employees that had previously expressed interest in exploring the opportunities. Those that attended were blown away by the solution that was developed.
Maybe he’ll get to present his work to his school and get a mention on the KCAD blog.
Amanda, Justin, and Xiaoyang will use these insights to work on the project for the remainder of the semester, culminating in a presentation at KCAD in early December. For now, they are eager to continue with this opportunity to use their knowledge in tangible and realistic ways, practicing design as they will upon graduating from KCAD.
Maybe his research will get coverage on the local ABC News and CBS News stations.
“Part of what makes this special is that the ideas won’t finish when the class finishes, they’ll continue to move on,” Jon Moroney, Associate Professor of Industrial Design at KCAD said.
Maybe he’ll change the world of healthcare.
Moroney says KCAD has always worked with corporate partners or sponsors, which helps students build their portfolio but says this project is grounded in real-world experiences.
Can you design a solution for people you don’t respect?
More importantly, how can organizations like ours maintain safe spaces?
We can set the group to private and require people agree to keep conversations within the group confidential. We can screen prospective group members. We can screen each post. We can monitor comments.
We already do all these things. It didn’t prevent this.
I still believe this must be some sort of misunderstanding. Hospitals and universities are far too cautious to condone research without informed consent.
Can this really be a problem online support groups need to worry about?
I shared the story with a group of 16,500 administrators of Facebook groups. Their responses suggest that this sort of behavior is common among unscrupulous journalists and reality TV producers, but no one had encountered anything like this.
It’s brave to open up about our experiences and ask for support.
It can feel safer within a group of people who are going through similar experiences. We can agree to keep things confidential, but it’s always an act of faith to trust another person.
The mission of The Caregiver Space is to be a place centered on those who don’t feel safe in traditional support groups. The ones who have faced rejection by families of origin and faith communities. The ones who have learned not to ask for help from the system, because if it comes it comes at a cost. The ones whose lives and families don’t look like the ones in healthcare brochures.
We built ourselves a safe space to support each other and share our wisdom. One that operates independently of hospital systems, the nonprofit industrial complex, and the government.
I’m grateful for the people who do research research who made time to talk to me about what happened. They reassured me that this is not how universities or medical innovation firms operate.
I’m grateful for the community managers who gave me advice for keeping our community private.
Especially for the Canadians who did so during the holiday weekend.
If you’re a student researcher, there are ways to ethically recruit online participants for your studies. Even if you plan on gathering data from existing conversations on public forums, there are ethical limits to using public information.
Ultimately, I don’t think it matters what professors are teaching their students. Most people dedicating their careers to support caregivers do so because of their respect for other people, not despite it.
Speaking of ethics and technology, two high school friends just released books on the ethics of algorithms and machine learning and the social dynamics of living with robots.
Those and The Care Manifesto are next on my reading list.
My background: I completed an MSW degree from Southern Connecticut State University that included a social service research project. If nothing else, I learned how nasty IRBs can be, as my thesis project was turned down at my place of Internship on the basis of "not contributing to corporate goals." The thesis was published and is in the library at my school. Title: "What Caregivers Want as Social Support." My advisor worked it out! (1995).
I also birthed 2 scientists, one a professor of neuroscience in a prestigious university. She does "real research". She is published in Science magazine. The other is equally published in her field of Chiropractic Care. She also has a Ph.D in Bio-Chemistry. The 2 sisters do not speak because of disagreements on "research".
I also administrate an online group for "Melanoma Caregivers".
I give this background to support my response HERE.
Thank you for your enlightening post of how some colleges have changed since I was in school! I am sitting here shaking my head that such disrespect was tolerated in the name of "research"! How are the students instructed on the VALUE of an IRB unless they experience a standard of protocol and a standard of confidentiality required by solid research? Perhaps they need to be taught the value of independent peer review as well.
I would wonder how this school maintains accreditation or does it care? The value of IRB review as well as peer review keeps us SAFE in our world of declining morals, values, and ethical dilemmas.
What if, we followed a sloppy scenario in the development of a Covid vaccine? What if the researchers graduated from a non-accredited school, without having learned how to justify their research to a panel of professors? What if they wrote a dissertation and did not have to defend it in front of faculty and peers? What if they found a publication that did not require independent peer review? What if the FDA and CDC did not value standards of review in the research? Would you validate and allow the vaccine in your arm?
I congratulate you for making this situation public in your forum. As a member, I feel protected and safe by your actions. You provide a safety filter for your members and readers and that filter is extremely important for the self-disclosure that members find useful to other readers and themselves.
Congratulations and Best Wishes! May your members fully appreciate what you have said in this email. You are providing a service by disclosing this important work! Thanks you!!!
Hi Cori, as you know, I co-instruct a course at McMaster University called the Family Engagement in Research course. We bring 15 parents of children with disabilities together with 15 researcher trainees and give them a curriculum that includes both the theory and practice of partnering in research. We have a whole section on ethics and I am going to include this post of yours in the required reading. This situation drives me NUTS! If this ever happened in research I'm aware of in Canada, I'd complain to all the funding agencies and there would be hell to pay. I'm so disappointed this happened at CGSpace. :(