WESTBOROUGH, Mass. – Making a stay in the hospital – or a visit – a better experience for patients and their families is the focus of a first-ever meeting today among some 50 Massachusetts hospitals and 160 members of Patient and Family Advisory Councils, or PFACs.

Many hospitals, some in Massachusetts, have established the councils, which enable former patients and their families to give their input to administrators.

Dan Wolpert of Worcester, a former heart patient, has been on a PFAC that's advised the UMass Memorial Medical Center there on such things as reducing wait time on phone lines to streamlining the directions in the hospital's halls.

"It was definitely useful for them to hear from us,” he says. “'Well, you know, when you're looking for your loved one and you're in a panic, you need something obvious. You don't want complex directions.'"

Since 2008, the law has required the PFACs. This is the first time they're all getting together with each other and the hospitals, although some Massachusetts hospitals are not yet in compliance.

Wolpert, who is 44, decided to volunteer for the PFAC after receiving hospital care he highly appreciated following a heart attack. He says the council is more than a suggestion box or a gripe session.

"To call it a gripe session – definitely not,” he says. “I would call it much more of a cooperative environment. And sometimes it gets critical."

Amy Whitcomb Slemmer, executive director of Health Care for All, the organizer of the conference, says PFACs have addressed such things as fall-offs in services over weekends.

"You know, our illnesses aren't on a Monday-through-Friday schedule,” she says. “And I know that there are hospitals that have been in the forefront of making sure that the services and care delivered is seamless, regardless of what day of the week or what time of day it is."

Whitcomb Slemmer says Health Care for All was the leading proponent of the PFAC law.

"But we also know there's quite a lot of room for improvement,” she says. “Not every hospital provided their report. Not every hospital's going to be present. And so I hope next year I'll be able to tell you that we have a 100 percent participation from across Massachusetts."





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September is Self-Care Awareness Month and the American Heart Association in Missouri is urging caregivers to take some much-needed time for themselves.

Missouri has around 600,000 family caregivers, many of whom provide unpaid care to loved ones with heart disease, cardiac events and other debilitating illnesses. The emotional and physical toll can be severe, with 21% of caregivers reporting their own health has declined.

Dr. Ravi Johar, chief medical officer for UnitedHealthcare and a member of the American Heart Association of St. Louis, wants caregivers to understand proper self-care is not selfish.

"It's really important that after an acute event, whenever you've had a chance to kind of catch your breath, sit down and think about exactly what they need and exactly what you need and how much you can give," Johar recommended. "That's not being selfish. That's not, not taking care of them. That's doing the right thing for both of you."

According to the American Heart Association, it is important for caregivers to have someone they can confide in about their fears and doubts; a person who can offer reassurance and emotional support.

A 2023 AARP survey showed nearly 40% of family caregivers spend more than 20 hours a week assisting their loved ones from driving to appointments to providing direct care, many while also working and raising children. Johar stressed the importance of caregivers using time off from work wisely, which includes new mothers with babies in neonatal intensive care.

"The baby's getting the best care in the hospital and there's nothing you can do to help," Johar pointed out. "Go ahead and go back to work. Save that time, go in every evening. Spend all night or as much time as you want with the baby. But save your time off, because when this baby comes home, then you're really going to need to be there."

Doctors also emphasized the critical role of regular exercise, like brisk walks and the need for caregivers of all ages to maintain a heart-healthy diet. The habits help manage stress and boost energy levels.

Self-measuring blood pressure sites are coming to the Northwest, starting with a community organization in Portland.

The American Heart Association and Providence Health Plan have launched a program to bring self-monitoring blood pressure equipment to 20 clinics and community organizations in Oregon and Washington. The first was introduced at the Portland Opportunities and Industrialization Center, a training center serving more than 3,000 students age 17-65.

Michael Hale, a health navigator at the center, said some people get "white coat syndrome" when they visit the doctor, causing inaccurate blood pressure numbers.

"The beauty of this program is to be able to have our staff use the blood pressure monitors at home or in their office when they're regulated, before they drink their coffee," Hale explained. "Then they'll be able to log it throughout the week and then use that information, take it to the doctor."

Hale pointed out people can then discuss with their doctors whether it's time for blood pressure medication or lifestyle changes, depending on the readings. The program will loan out blood pressure monitoring equipment to students, families and staff at the center.

Blood pressure is an important indicator of health. Left untreated, high blood pressure can lead to heart attack, stroke and other health issues.

Meredith Collett, executive director of the American Heart Association of Oregon and southwest Washington, said the program is designed to bring monitoring to people who may not have access.

"Our hope with our collaboration with Providence Health Plan is to remove those barriers to health care access by setting up these self-measured blood pressure cuffs with POIC for at-risk communities," Collett noted. "They can really track and understand their numbers."

The initiative to bring self-measuring blood pressure equipment to clinics and organizations in the Northwest is expected to expand to 20 over the next three years.

Nonprofits across Texas are coming together to address disparities in health care for the Latinx community. A report by the Commonwealth Fund shows some factors that lead to the differences in health care include high poverty rates, elevated levels of pollution and crime and a lack of green spaces.

Paulina Sosa, Latinx Voces founder, said many in the Latinx community lack access to vital resources that could improve their overall health.

"Lack of physical access to a clinic or a doctor, the lack of information on how to go about accessing those health care services, and of course, it could be related to the lack of linguistics, otherwise known as information in Spanish," she said.

She added health disparities that had been in existence for years were brought to light during the COVID-19 pandemic when Hispanics experienced some of the highest death rates.

Edgar Carmona, president of the nonprofit Alliance for Progress in Dallas, which works to reduce health-care disparities among vulnerable populations, said some in the Latinx community don't seek medical care because they don't trust caregivers from other races.

"We just don't see the medical community being able to represent the community that it serves. We, as a society, are perhaps not creating the opportunities needed, or the encouragement for our youth to go into this field," he continued.

Both Sosa and Carmona said collaborations can help improve health outcomes for the Latinx community. Sosa added that during and after the pandemic, community partners, small businesses and faith-based organizations worked together to improve the lives of those most vulnerable.

"How do we ensure that the momentum, around addressing these disparities - particularly for Latino and Spanish-speaking communities - how do we ensure that the momentum continues? That is one of the biggest questions we're trying to tackle. We really believe that partnership is at the center of that solution," Sosa said.


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