Esmita Charani

Societal biases appear just about everywhere, and once you notice them, it is impossible to ignore how they affect our decisions and they way we build our societies. You also realize how normalized they can be. Artificial intelligence trainers are thinking more about bias in data sets. Data scientists are thinking more about how bias creeps into the data used to analyze just about everything related to health, from research to resource allocation. A lot of it though is somewhat hidden, especially in data sets. You really have to know your way around the data you’re working with in order to see it. You must know how the data was collected and from whom, and how (and which) subsets were included or discarded. For most people, the concept of how bias weaves its way through a culture is unimportant egghead type of stuff. It’s hard to see. Then of course, there’s always a degree of denial that it even exists, which may have some impact on whether we even want to do anything about it.

But if we care at all about justice, fairness, respect, equity, and ensuring that you or an organization act ethically, we dig deeper, trying to find the source of the imbalances. While it may be hard to see if you’re not a data scientist, bias is much easier to see if we look at how we represent ourselves and each other through images.

My guest on this episode focuses on, among other things, anti-microbial resistance from a global health perspective. But when her conference presentation was “branded” by the organization sponsoring the event, Esmita Charani noticed that the images did not reflect much about the work she does. Intrigued, she and colleagues examined global health images for bias and unethical practices, resulting in a helpful framework to guide us to a more dignified and respectful use of images. The framework considers relevance, dignity and privacy, consent, representation, and more.

Esmita Charani is an Associate Professor at the University of Capetown, where she investigates intersectionality and anti-microbial resistance (AMR). In the UK, she is an honorary reader in infectious diseases, AMR, and global health at the University of Liverpool. Esmita is also a visiting researcher at Haukeland University Hospital in Bergen, Norway, and an Adjunct Professor at Amrita Institute of Medical Sciences in Kerala, India.

I welcome comments in the section below. Remember, when we respect ourselves, each other, and the planet, the health of everyone and everything, improves.

-Rod

Anna Gilmore

A couple of episodes back, I had the pleasure of interviewing Rob Moodie, who led a project to examine commercial determinants of health in more detail. The result was a three-paper series published in The Lancet. The project produced a model that illustrates the intricate interrelationships among the various commercial actors, their drivers, and the environments in which this all plays out. Some of the consequences of commercial interests are very good, while others are well-known as having negative effects on individuals and societies.

In this episode, I spoke to the model’s architect and visionary, Anna Gilmore. Anna is professor of public health, director of the Tobacco Control Research Group, and Co-director of the Beacon for 21st Century Public health at the University of Bath. She is a highly-regarded thinker and advocate in national, regional, and global circles. She is the recipient of the Public Health Advocacy Institute Award, the WHO World No Tobacco Day Medal, the inaugural European Health Leadership Award for pioneering change makers, and has received a Special Recognition Award from the WHO Director General. Anna is also a member of the World Health Organization’s international expert group on the commercial determinants of health.

In this episode, we discussed a wide range of issues including commercial practices like financial, political, scientific, and reputational management, and how all of this fits together. She reiterates that looking at commercial interests and determinants this way is actually very pro-health, not anti-commercial. These, along with sector-specific public policies, and regulatory approaches intersect to create systems that have immense impact on personal, public, and global health. Sometimes the impact is empowering, and other times it is severely limiting.

The upshot of all of this is that while it may be almost incomprehensible to think about how to improve health in this complex environment, Anna and many others are working to address the question: “How can we make our systems better?” This model is just a starting point, and should give any organization a solid starting point to reflect on the health impact of its interests and activities. As Anna notes, the only way to really address this issue is through a multidisciplinary, multi-sector approach.

We can all participate in making change. From my perspective, it starts with our priorities and values. We must believe that human and planetary health are priorities. That these are baseline values. If we honestly apply those values to all we do, we can improve our systems. When we respect ourselves, each other, and the planet, the health of everyone, and everything, improves.

The link above will take you to the entire Lancet series, as well as related graphics and a version of the model to peruse.

I hope you enjoy this episode!

Rod

MaryAnne Sterling, CEA

In this episode I discuss the experience of caregiving, especially related to family members with dementia, with MaryAnne Sterling. MaryAnne is a caregiver advocate and subject matter expert in the Alzheimer’s disease community. Her experiences with caring for family members with dementia, and a long term commitment to making a difference makes her a highly respected voice.

I was pleased to see in recent weeks that the family of Henrietta Lacks and Thermo Fisher have agreed to settle a suit filed by her estate. Both parties say they are pleased the matter is resolved outside of the courtroom. Neither side revealed any details of the agreement. I think this is great news and long past due. If you’re not familiar with the story of Henrietta Lacks, I’ll try to summarize succinctly. Over 70 years ago, Henrietta’s cervical cancer cells were removed and used for research without her consent. Uniquely, these cells continuously reproduce, making them an ideal source for cancer researchers. But the Lacks family never received any compensation for the use of these cells, which have helped advance research in countless ways. The entire story is told in the book The Immortal Life of Henrietta Lacks, by Rebecca Skloot. There’s also a good summary of the settlement in Nature.

I also wanted to call attention to an opinion piece in the Journal of the American Medical Association called “The Paradoxical Decline of Geriatric Medicine as a Profession,” by Dr. Jerry Gurwitz. He notes that the number of geriatricians is on the decline, and there may be several reasons for this, including lower compensation and the prevailing attitude in our culture about older people. He says gerontology is actually pretty exciting stuff because of its complexity, and it should attract more physicians who really like to dig in and solve hard problems. Interdisciplinary care and addressing the needs of family caregivers also offer opportunities to improve lives while engaging in complexity.

Back to my interview with MaryAnne: She supported multiple parents with dementia and meets with policy makers, speaks at conferences, and serves on several committees and advisory boards. MaryAnne is patient research partner and ambassador for the Patient Centered Outcomes Research Institute (PCORI). She is on the steering committee for iConquerMS Caregivers, and the Beryl Institute global patient and family advisory board. MaryAnne is EVP of caregiver experience at Livpact, and is currently working on her masters in public health at George Washington University. MaryAnne also started a podcast called “Us vs. Them: Patients and Caregivers Confront Healthcare.” She shares more about it during the interview.

Caregiving can have incredible effects on the physical, mental, and financial health of the caregiver. It is exhausting. It has social implications as well. I personally know of a situation in which an individual in a leadership role at a company told employees that they would never again hire anyone who had elderly parents because, I guess, those obligations got in the way of being owned by your employer. That person’s lack of empathy, and the underlying values that lead to that moral emptiness have stuck with me. I hope we as a collection of societies can change how we think about aging and dementia care.

For starters, caregivers should be considered part of the care team. Not ignored or treated like an interference.

When we respect ourselves, each other, and the planet, the health of everyone and everything improves.

Thanks for listening, and if you have comments, scroll down and share.