People First, Disability Second

Medicine does not need more cryptic language. And so upon discovering PFL, I did not celebrate the arrival of a new acronym in the world of health-care communication.

What PFL stands for, on the other hand, we should all celebrate.

PFL is short for People First Language, a movement to promote dignity and inclusion for people with disabilities. And unless you’re a headline writer with space limitations, there is no good reason to shorten it. So, Delaware legislators, lose the acronym. But keep the concept. By all means, keep that going forward.

I learned about Delaware House Bill 416 from legal scholar Thaddeus Pope’s blog.

“The legislation creates no new rights or duties,” Pope writes. “But like new legislation in many other states, it improves the vocabulary and terminology in existing law relating to people with disabilities.” 

Some changes are fairly subtle: from “the disabled” to “persons with disability.” Others replace insensitivity with respect: Gone is the term “mental retardation,” in favor of “intellectual disability.” The purpose is to promote dignity and inclusion. You’ll find a chart with more People First examples on Pope’s blog.

“This language emphasizes that individuals are people first, and that their disabilities are secondary,” according to a summary of the bill.

Understanding and clarifying language was pivotal to the Harvard Community Ethics Committee’s recent study of recipient selection criteria for pediatric organ transplantation.

The CEC wrote: “Neurodevelopmental disability, intellectual disorders, and related terms may hold clear meaning for medical professionals and, more particularly, within a transplant center, but they do not seem to mean the same thing from center to center, and certainly they held no consistent or clear meaning among the members of the Community Ethics Committee.”

For patients and families, simply understanding what’s going on in a medical crisis is challenging enough. When consent is needed, obtuse, legalistic and cryptic language can render “informed” consent an absurdity. But so often that is the very language of consent forms.

The forms tend to be written by lawyers, and “lawyers are not good at plain language. We’re good at protecting our clients, but lawyers don’t think about patients understanding.” That from Chris Trudeau of Michigan-based Thomas M. Cooley Law School, in his presentation at the Institute of Medicine’s recent workshop on health literacy and informed consent.

So the Patient First movement’s attention to language is worthwhile -- and not simply for people with disabilities. The World Health Organization has found that even in translation, the world “intellectual” is better understood by more of the public than are “neurological” or “cognitive.” In its report on pediatric organ transplantation, the CEC embraced the term “intellectual developmental disorder” over alternatives for its potential for achieving understanding and engendering trust in the organ transplantation process.

As the World Health Organization said in a 2002 report: “Every human being can experience a decrement in health and thereby experience some disability. This is not something that happens to only a minority of humanity.”

Understanding Tuskegee's Legacy (Part 1)

First of two parts.

Four decades after the Tuskegee experiments ended, during a workshop on health literacy and informed consent, Dr. Alicia Fernandez of UC San Francisco said something remarkable and even chilling.

“That story,” she said of the infamous research, “most of my (medical) residents don’t know it.

“I guess they didn’t read the paper that day,” she added in disbelief. “But my patients know it.”

At Tuskegee, the subjects knew neither the title of the research (“Tuskegee Study of Untreated Syphilis in the Negro Male”) nor that they’d even been diagnosed with syphilis. When penicillin was found effective for syphilis, they continued to be studied but not treated with it. They suffered, infected others, and many died. This went on for 40 years, with government support.

The research began at the time Nazi doctors were engaged in the infamous work that resulted in the Nuremberg Code. But Tuskegee is in America, and the research continued long past the Nuremberg verdicts. (Good sources for learning about Tuskegee are here and here.) 

Though the men apparently participated willingly, they were lied to about what they were participants in. And so it was fitting that the workshop at the Institute of Medicine in Washington, D.C., coincided with the anniversary of Tuskegee’s end, on July 29, 1972. Tuskegee holds valuable lessons in health literacy, informed consent and the importance of understanding how they relate.

There is no overstating Tuskegee’s legacy of distrust in medicine. Of the major principles of medical ethics -- respect for persons, or autonomy; do no harm; do good; and justice -- Tuskegee betrayed all four.

Disparities in research and treatment are hot policy topics in medicine, and new doctors should understand their inheritance of patient distrust. Dr. Fernandez’s revelation indicates that short memory is another legacy of Tuskegee.

While the D.C. workshop took place, a group of physicians, scientists and interested others participated in a Twitter dialogue about Tuskegee. The events were unrelated, and yet many of the issues raised during the former, including low participation in research among blacks, were addressed in the latter.

“Even growing up my parents told me about this,” one participant tweeted. “Many blacks know of it and fear any ‘research’ about them.”

The TweetChat was organized around the hashtag #NSTNSchat. The acronym stands for National Science & Technology News Service, devoted to inspiring academic and professional interest among African-Americans in science, technology, engineering and math, or STEM for short.

“Are African-Americans still afraid of being exploited by science?” #NSTNSchat participants were asked. The answer is yes, but there is much more to it, and the dialogue was rich with insights into the role and importance of bioethics, strategies for affectively addressing health disparities and distrust, and the need for more African-American STEM specialists. 

Key players behind the dialogue were Dr. Caleph Wilson of the University of Pennsylvania, Princeton sociologist and author Ruha Benjamin and Dr. A. Breland-Noble of Georgetown. So engaged was this TweetChat, with so many different voices, that it went well beyond its allotted time.

The #NSTNSchat transcript is long and has many threads. So I tried something different in writing about it. I captured many of the main tweets and edited them into story form. It is constructed of the actual tweets, mostly verbatim, with some editing mainly to spell out abbreviations and acronyms, add punctuation and subtract redundancy. Context might change some from the original dialogue, and the tweets are presented as one voice, not multiple authors. 

The composite story appears in the blog post below. The original Tweets, and their authors, can be found on the Storify transcript.

For more about the National Science & Technology News Service, visit the website, and follow  @TheDarkSci on Twitter.

Understanding Tuskegee's Legacy (Part 2)

Second of two parts. This story is constructed entirely from Tweets in a chat organized by National Science & Technology News Service. See the original transcript here.  

To understand the Tuskegee study, you have to understand it within the context of racism. The US apologized for the Tuskegee Syphilis Experiment, led by the US Public Health Service on rural African American men, 65 years after it occurred. President Clinton apologized for the government’s involvement. But was that enough?

Tuskegee plays a role in minimal participation of blacks in clinical trials. The impact of the syphilis study can be seen today in huge health disparity gaps. Lingering mistrust of clinical research is real and valid even for those of us in the industry.

It matters because it still impacts why so few clinical trials include African-Americans and other people of color. Mistrust of medicine leads to many people not asking questions of doctors about their care and to low medicine adherence.

Tuskegee should make us wary about all invocations of research for “the greater good” -- great and good for whom? Who decides?

Consider that many people are still afraid to ask their own doctors demanding or insisting questions. Minorities and vulnerable people need to ask more questions. Easier said than done  with underlying fear and mistrust. 

Fear is a byproduct of powerlessness. So you don't treat "black mistrust" simply with more information, but with empowerment. Trust-building is not a function of giving people facts. I wish public health researchers understood this. We need more minorities and people of color in the feeder disciplines that lead to folks going into bioethics.

We should be at community health fairs and screenings, libraries, blood drives, etc. True community participation in research requires sharing power and benefits from research. I've heard researchers say they don't know where to find patients to include. If you don't look for us, we can’t be there.

I wonder about how much the men and their families actually trusted the senior officials and just deferred instead. The men were denied treatment for their disease for many, many years even after treatments became available.

Informed consent means nothing if you don't understand the implications. The main reason I hear when people give consent: "Maybe this will help my kids, grandkids, etc."

Are there structural barriers preventing minority patients from increasing research participation? I think that, as much as a lack of diversity, it is a lack of cultural awareness on the part of the researchers. Non-minority researchers need to educate themselves and then advocate for peers to be better.

Mistrust + lacking public health outreach = research gaps.

Discussions need to be proactive. It shouldn't be relegated to Black History Month at our institutions. Educate ourselves as to what questions to ask researchers and insist those questions are answered to their satisfaction.

What is mistrust turning us into? Perhaps we should invest more in treating ailing social order: inequality makes us all sick.

Community-based participatory research is so important. Partnering with communities helps build trust. Work WITH people of color, and not ON, and trust will be built. 

Let’s reframe mistrust -- not as an OBSTACLE to overcome, but as a set of INSIGHTS into flaws of the medical and social system. “Cultural mistrust” can be protective, even healthy and appropriate. Patients know when to trust. They can feel it.

Science is not an inherently noble value or cause. Applying bioethics allows what we do to be noble. Without justice at center, bioethical principles can be used to legitimate unjust practices. IMO, too often people rely on "but the IRB said it's OK." Institutional Review Boards are human, too.

I'd like to think that we've learned to be more ethical in research as a result of Tuskegee. Prison studies say otherwise. Applying bioethics is key. Deadlines, timelines, dollars & powers that be will always exist. Bioethics keep us honest.

Bioethics 101: these are *real* people with *real* lives, not petri dishes and control agents. 

As we discuss importance of research, remember importance of developing relationships with and within communities  Too many scientific "centers of excellence" and not enough community engagement -- also part of the trust problem.

The original sin of Tuskegee was the devaluation of black humanity.

I've learned there’s too much emphasis on "black distrust" as cultural pathology: W.E.B. DuBois: "How does it feel to be a problem?" 

Saying "black distrust" makes it sound like there's no issue with institutional trustworthiness. We need to place more emphasis on trustworthiness of our institutions. "Black distrust" diverts attention. 

I've also learned that African-Americans can teach researchers a lot about how to do our work, if we just ask. We need a scientifically literate population. It's a public health issue!

The problem was devaluation of black humanity, which helps explain so much in our community. We need to get past Tuskegee and expand the conversation of minorities and ethics.

This is why diversity of the research workforce is so key. We must have diverse investigators to inform equity.

We have a long and winding road ahead of us, and African-Americans have legitimate concerns re: research. Listen to community. Don’t make assumptions. Ask questions before acting. The solution isn't to cure cultural pathology, It's to end racism in research.

We can never give up on our quest to stay in the biomedical science enterprise. There is strength in diversity.

Institutions need to show actual steps they've taken and are taking to protect patients; no ambiguous bullet points. Healthy skepticism is good. Keep asking questions. Refuse to be ignored. Be your own advocate.

Biomedical research industry has to be more of an advocate in all socio-economic realms that impact health disparities. What more should the biomedical research community do to earn the trust of people of color? Shut up and listen.

Do you believe lack of diversity in science researchers makes a difference in building trust?

Can I *like* that question about a billion times!?

For more about the National Science & Technology News Service, visit the website, and follow  @TheDarkSci on Twitter.