Medical malpractice: Dr. Lisa Iezzoni’s experience with substandard health care: The case of the US biomedical research funder
For a quarter of a century, Dr. Lisa Iezzoni, a professor of medicine at Harvard, has heard the same story during research with hundreds of people who have disabilities: Health care that was substandard. Medical offices that were not accessible. Doctors who didn’t respect them.
The result was a study that gathered doctors, a mix of primary care physicians and specialists recruited from across the United States, into three focus groups on video conferences. Protected by anonymity — only first names or nicknames were used — the groups of eight to 10 doctors began to talk. At first, they were guarded, but as the sessions that Dr. Iezzoni moderated wore on, they began to speak more frankly. They could not see that the doctor was in a wheelchair.
The main US biomedical research funder is facing calls to change its mission statement because of claims that its current one perpetuates stereotypes that disabled people are “flawed” and need to be “fixed”.
The term disabled encompasses people who experience impaired vision, mobility or hearing, have a psychological or mental illness or chronic condition, are neurodiverse or have learning disabilities. Disabled people represent more than 27% of the US adult population — making them the single largest minority group in the country. Yet fewer than 2% of NIH-funded researchers report that they have a disability.
The NIH Subcommittee to the Director Working Group on Diversity: How to Promote Health, Lengthen Life, and Reduce Illness
The Advisory Committee to the Director Working Group on Diversity endorsed recommendations of the subgroup after the publication of the 66-page report last month. There is an alternative mission statement that states that they want to find fundamental knowledge about nature and the behavior of living systems that can be applied to enhance health, prolong life and reduce illness.
The subgroup has three co-chairs, including Lisa Iezzoni, a researcher at Harvard Medical School in Boston, Massachusetts, and Bonnielin Swenor, the director of the Disabled Health Research Center in Baltimore, Maryland.
The NIH’s current mission statement is “to seek fundamental knowledge about the nature and behaviour of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability”. Reducing disability means eliminating people like Bonnielin and me, says Iezzoni. Swenor is visually impaired and Iezzoni has mobility constraints.
“We are asking for data and public sharing of that data,” says Swenor, “so that the community, policymakers can track and understand what has happened — and if it’s working or not.”