Health Life

As hospitals walk the tightrope of patient data-sharing, one system offers a new balance

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Every major medical center in America sits on a gold mine. The data they hold about their patients and research participants could be worth millions of dollars to companies that would explore it for clues that could lead to new medicines, medical technologies, health apps and more.

Such efforts would take partnerships between industry and —which are already essential to medical innovation—to a new level.

Before COVID-19 struck, major health systems had started selling the “mining rights” to troves of their health data and stored materials—including details about patients’ DNA found in samples of their blood or tissue. Current law allows this, as long as names and identifying details are stripped from patients’ or research participants’ individual records and samples before turning them over.

Now that the pandemic has squeezed hospitals’ finances further, and increased the need for research on a grand scale, more medical centers may seek income from such ‘big data’ agreements with industry partners. That’s especially true for those whose patients also volunteer for in-house research studies.

But a new framework published in the New England Journal of Medicine could help them do so more responsibly, going beyond the minimum legal requirements and respecting patients by giving them more say in how their individual data may be used.

It was written by a team from Michigan Medicine, the University of Michigan’s academic medical center—one of the first to adopt such a framework. The authors lay out an approach already applied to thousands of U-M patients and research study volunteers, and dozens of projects.

“We believe our approach provides an ethical way to advance medical discovery and innovation while also respecting the trust patients and research participants put in the University of Michigan,” says first author Kayte Spector-Bagdady, J.D., M.Bioethics, chief of

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Caregiver Health: MedlinePlus

What is a caregiver?

A caregiver gives care to someone who needs help taking care of themselves. The person who needs help may be a child, an adult, or an older adult. They may need help because of an injury, chronic illness, or disability.

Some caregivers are informal caregivers. They are usually family members or friends. Other caregivers are paid professionals. Caregivers may give care at home or in a hospital or other health care setting. Sometimes they are caregiving from a distance. The types of tasks that caregivers do may include

  • Helping with daily tasks like bathing, eating, or taking medicine
  • Arranging activities and medical care
  • Making health and financial decisions

How does caregiving affect the caregiver?

Caregiving can be rewarding. It may help to strengthen connections to a loved one. You may feel fulfillment from helping someone else. But caregiving may also be stressful and sometimes even overwhelming. Caregiving may involve meeting complex demands without any training or help. You may also be working and have children or others to care for. To meet all of the demands, you might be putting your own needs and feelings aside. But that’s not good for your long-term health. But you need to make sure that you are also taking care of yourself.

What is caregiver stress?

Many caregivers are affected by caregiver stress. This is the stress that comes from the emotional and physical strain of caregiving. The signs include

  • Feeling overwhelmed
  • Feeling alone, isolated, or deserted by others
  • Sleeping too much or too little
  • Gaining or losing a lot of weight
  • Feeling tired most of the time
  • Losing interest in activities you used to enjoy
  • Becoming easily irritated or angered
  • Feeling worried or sad often
  • Having headaches or body aches often
  • Turning to unhealthy behaviors like smoking