Make decisions with your doctor that meet your needs.
Discuss risks, benefits, and costs of tests and treatments. Ask about other options and preventive things you can do.
Be sure you are getting the message.
If you have trouble hearing, ask your doctor to face you when talking and to speak louder and more clearly.
Tell the doctor if you feel rushed, worried, or uncomfortable.
You can offer to return for a second visit or follow up by phone or email.
Learn more about communicating with your doctor:
https:/www.nia.nih.gov/health/ doctor-patient-communication.
National Institute on Aging

The nonprofit organization FAIR Health, which aims to bring greater transparency to health care costs, conducted two separate surveys: one with older adults aged 65 and older and one with family caregivers/care partners aged 18 and older. The surveys were fielded in November 2021 and reached 1,005 older patients and 507 caregivers/care partners. Each survey asked respondents about the importance of healthcare costs to decision making, attitudes toward shared decision making, barriers to informed decision making and healthcare navigation, and navigation of the healthcare system and needs for resources and tools.

An analysis of the results, released in February 2022, revealed the following:

One in four older adults (aged 65 and older) never know the costs of health-care services before getting a bill. Although 32 percent of older adults reported that they “sometimes” know the costs of healthcare services before receiving their bill, 25 percent of older adults reported that they “never” know costs of healthcare services before receiving their bills, while 21 percent reported that knowing their healthcare costs in advance depended on whether the care was given by healthcare providers in their health plan networks or those not in their health plan’s network.

A significant proportion of older adults consider health-care costs to be an important factor when making decisions, but more than a third have difficulty getting such cost information. Thirty-seven percent of older adults felt that healthcare costs are an “important” factor when making healthcare decisions, while 22 percent felt that it was the “most important” factor when making healthcare decisions. Sixteen percent of older adults reported that healthcare costs were “a thought” when making a healthcare decision, while 24 percent reported that they do not think about out-of-pocket cost when making a healthcare decision. However, 35 percent reported that they found getting information about their healthcare costs to be “somewhat hard” or “very hard.”

According to the survey, a significant proportion of family caregivers/care partners consider costs to be an important factor in making decisions about the person for whom they provide care (their care receiver).  But most do not discuss costs with healthcare providers. Sixty-four percent of caregiver respondents felt that healthcare costs should be “important” (34 percent) or “most important” (30 percent) to their care receivers’ healthcare providers and/or teams. Twenty-four percent of caregiver respondents reported that they did not want the healthcare provider to think about out-of-pocket costs in decisions about their care receiver’s care. However, only 42 percent reported that they discussed those costs with their care receivers’ healthcare providers and/or teams. Among the subset of caregiver respondents who reported that they do not discuss costs with their care receivers’ healthcare providers and/or teams, 64 percent would not like to engage in such discussions.

Despite a strong interest in having shared decision-making discussions about cost, the survey found, just under a third of older patients do not have such conversations with their healthcare providers and/or healthcare teams. Forty-five percent of older adults are “interested” or “very interested” in having shared decision-making discussions with their healthcare providers and/or healthcare teams. Moreover, 41 percent reported that they “always” or “often” take part in such discussions with healthcare providers. However, 29 percent reported that they have “never” engaged in shared decision making with their healthcare providers.

Among older adults, encountering difficulties in obtaining cost information may be an obstacle to accessing needed healthcare. In response to the question, “How easy is it to get facts and see what your healthcare costs will be?,” 35 percent of respondents said that it was “somewhat hard” or “very hard” to do so. Of this group, 27 percent reported that this difficulty got in the way of their ability to access needed care and 21 percent reported that it discouraged them.

Over one in four (26 percent) older adults reported putting off or skipping needed healthcare due to cost. Older adults with lower household incomes were more likely to report forgoing needed care compared with older adults with higher household incomes. Thirty-two percent of older adults with household incomes below $50,000 reported that they skipped getting needed healthcare due to healthcare costs. This compared with 19 percent of older adults with household incomes between $50,000 and $100,000 and 16 percent of those with household incomes above $100,000.

Family caregivers/care partners have a significant need and appetite for healthcare information, resources and tools that help them make better decisions about their care receiver’s care. When asked about the kinds of information, resources and tools that would help them make better decisions about their care receivers’ care, most caregivers/care partners selected information about providing better care for their care receivers (42 percent) and costs of care (40 percent), followed by clinical information (35 percent), educational training to help care partners steer through the healthcare system (33 percent), information about different models of care that can coordinate different services (31 percent) and tools that outline different care choices with costs (30 percent). Most caregivers/care partners would prefer to access such information, resources and tools via a website (63 percent) or an app on a mobile device, like a phone or tablet (45 percent), with the opportunity to print paper copies from a website (39 percent).

The surveys are part of an initiative funded by The John A.  Hartford Foundation.

FAIR Health President Robin Gelburd said: “FAIR Health’s surveys have confirmed the importance of providing objective, unbiased healthcare cost information and engagement tools to consumers. The surveys’ findings underscore the need and appetite for shared decision-making tools and resources that can help older adults and their caregivers/care partners make informed healthcare decisions, navigate the complexities of the healthcare system and improve their health insurance literacy.”

For more information, click here to visit FAIR Health’s website.

That’s where pharmacists come in. Whether at your local pharmacy or the U.S. Food and Drug Administration (FDA), pharmacists help patients achieve the best possible outcome when taking drugs.

Pharmacists can help people take their medicine properly and continue to take it for as long as recommended. For example, they can answer questions about other drugs and foods that can cause an interaction and advise you to consult with your health care provider when your usual medication is unavailable.

Pharmacists are a bridge between the patient and their prescriber. They are experts at interpreting information for patients.

This Consumer Update from the FDA can help you get the most help from your pharmacist.

“Help your pharmacist get to know you and what questions you have,” says pharmacist Mary E. Kremzner, a public health expert at the FDA. “Pharmacists really want to help people get the maximum benefit from the drugs they need to take, with the least amount of risk.”

For example, some large pills are hard to swallow. “The pharmacist will know the drug’s makeup and whether you can crush it without changing how it works,” Kremzner says.

Another risk is interaction – food-drug or drug-drug. “For example, if you take a statin to lower your cholesterol, you might need to avoid drinking large amounts of grapefruit juice because it can make some drugs too powerful, even toxic,” says pharmacist Lindsay Wagner, a public health expert at the FDA. “However, the strength of the interaction varies among drugs. If grapefruit juice is part of your daily routine, your pharmacist can recommend that you consult with your health care provider about an alternative so you can enjoy your juice safely.”

Let your pharmacist know what questions you have about the information you’ve received on a particular medication. This includes the instructions from your prescriber, information you received from the pharmacy, or articles you’ve read online. Conflicting advice and information can leave anyone confused.

Misinformation can add to the confusion. Many people who share misinformation don’t realize the information is false. Misinformation can come from people you know, like your friends and family, making it especially difficult to tell truth from fiction. Pharmacists are there to help sort through what you’ve heard.

“We’re here to help. We do our best to answer every question and help consumers find trustworthy and credible sources for information,” Wagner says.

Your pharmacist should know:

Everything you take for your health. All medications you take (prescription and nonprescription) as well as all vitamins and supplements.

Your medical history and experience with medications, including allergic reactions and side effects.

If you are pregnant or breastfeeding (nursing).

If you have trouble swallowing pills, opening bottles, reading labels, or remembering when to take your medicine.

Questions you have about what you’ve been told or read online about your medication.

How FDA Pharmacists Can Help

The FDA itself also has a staff of drug information pharmacists. The FDA’s Division of Drug Information (DDI) is home to a staff of pharmacists who respond to questions about human drugs for the U.S. public. DDI gets several hundred calls and emails each day, with more than half of them from consumers.

FDA pharmacists can even help you identify a tablet or pill. For example, there may be many different approved generics that can be substituted for one brand-name drug, and their tablets can look different.

“Generic drugs can vary in size, shape, and color and still be the same medicine,” Kremzner says. “That can be confusing to some people. When in doubt, call your local pharmacist or the FDA if you have questions about whether they are the same product. We also can help you understand the medications you’re taking.”

When in doubt, reach out and ask. Here are some of the top questions DDI pharmacists answer.

Q. What are the possible side effects of my medicine, and how can I report my experience to the FDA?

A. Approved drugs have benefits as well as side effects, which are listed in the drug’s labeling. If you didn’t receive a printout with your medication, you can find the labeling online from Drugs@FDA or labels.fda.gov. For OTC drugs, you can find side effects in the “Drug Facts” labeling printed on the outer wrapper or container of the drug.

To report a side effect or medication error, use the FDA’s MedWatch Safety Information and Adverse Event Reporting Program. Complete and submit the report online or call 1-800-332-1088 to request a reporting form sent to you in the mail.

Q. Where can I find credible information online about my medications and health?

A. The FDA website fda.gov/drugs offers credible and trustworthy information about prescription and OTC drugs. Medline Plus (medlineplus.gov) is a health information resource for consumers that provides high-quality, trusted information.

Q. Are generic drugs the same as brand-name drugs?

A. Yes. Federal law requires generic drugs to be the same as brand-name drugs. They are as safe and effective and meet the same quality standards as brand-name drugs. They are the same in the way they work, the way they are taken, and the way they should be used. Generics also reach the site of action in the body at the same rate and extent as the brand-name drugs.

Q. Will this treatment I read about online help or hurt me?

A. Health fraud scammers will try to sell you treatments that are not proven to work and may cause serious or even fatal injuries. Scams are very common today, especially on social media. If you’re unsure, ask your local pharmacist or contact the FDA.

Q. How do I discard medicine I no longer need?

A. The best way to dispose of most types of unused or expired medicines is to drop off the medicine at a drug take back location immediately. Many pharmacies also serve as take back locations.

Certain medicines should be flushed down the sink or toilet because they are especially harmful and can cause death in a single dose. Flushing medicines on the flush list helps make sure children, pets, or anyone else does not accidentally take the medicine. If you can’t get to a take back location and your medication is not on the flush list, you may be able to dispose of it safely in your household trash by following some simple instructions.

Stay Informed and Get Updates from the FDA

The FDA shares information about drugs through email updates and social media. Stay informed by following the FDA website, and DDI’s email alerts.

How to Contact FDA’s Drug Information Pharmacists

By email: druginfo@fda.hhs.gov

By phone: 1-855-543-3784 and 1-301-796-3400

To help improve communication with our pharmacists, I share six questions patients should ask their pharmacists, but don’t. These insights underscore the importance of having an open and educational conversation with your pharmacist about your medications and demonstrates the vital role pharmacists play especially as health care becomes more virtual.

1. Could this medication interact with my vitamins and supplements? Talk to a pharmacist about all the medications you take, especially when you are prescribed any new medication to confirm that non-prescription medications or supplements will interfere with your medications.
2. I’m taking multiple meds. What do I need to know? If you are on multiple medications for a chronic condition(s) you should speak with a pharmacist any time there is a change to your medication regime to check for potential drug-drug interactions, medication overlap or gaps in care.
3. What should I do if I forget to take my medication? Having access to your pharmacist 24/7 is particularly important when you forget to take a dosage at the scheduled time because he/she can help you get back on track. Talking with your pharmacist from the privacy of your home is another great reason to look for this 24/7 convenience.
4. Could this prescription make me unsteady on my feet? Some medications can make you dizzy or drowsy, and there are other hazards in the home that can cause a fall, especially as one ages and needs to get up frequently during the night. A pharmacist can provide home safety tips to avoid an accident.
5. I sometimes forget to take my meds. What’s a reminder that works? If you’re having trouble remembering to take your medications, your pharmacist can suggest digital tools, such as a reminder app to prevent you from forgetting to take your medications.
6. Is there a more affordable option for my prescription? If you are having trouble affording your medication, your pharmacists can help with more affordable options and recommendations, such as generics or less expensive formulary options.

Susan Peppers RPh is Vice President of Express Scripts Pharmacy with responsibility for Pharmacy Practice and Communication Experience Delivery. In this role, Susan is dedicated to quality and patient safety. Susan began her career at Express Scripts as a staff pharmacist more than 18 years ago and has served in a number of leadership positions, most recently as Sr. Director, Pharmacy Practice (Front End). During her tenure, she has had responsibilities for both Pharmacy Practice and Operations, including her role as a Director of Pharmacy Practice during integration and various site Operations leadership roles as a front-line leader and manager. Susan holds a bachelor of science degree in pharmacy from Ohio Northern University.

The Increasing Access to Quality Cardiac Rehabilitation Care Act of 2019 (H.R. 3911) was introduced by Representatives John Lewis (D-GA) and Adrian Smith (R-NE).

Research has found that women are 12 percent less likely than men to be referred to rehabilitation programs.

American Heart Association (AHA) CEO Nancy Brown welcomed the measure, saying in a statement that “Congress took a major step in 2018 when it included provisions in the Bipartisan Budget Act that authorized physician assistants, nurse practitioners and clinical nurse specialists, referred to as advanced practice providers (APPs), to begin supervising patients’ day-to-day cardiac and pulmonary rehabilitation care (CR/PR). This bill would move the effective date of those provisions to 2020 from 2024, bringing the benefits of these services to more patients sooner. Additionally, patients are facing long wait times in receiving referrals, and the longer patients wait to start cardiac rehab, the less likely they are to enroll. This bill would authorize qualified AAPs to order patients to receive these services, allowing for quicker referrals of patients.

“Significant barriers for Americans with heart disease and stroke were removed in the Bipartisan Budget Act, and this legislation goes further to help patients across the country. Coronary heart disease patients who enroll in cardiac rehabilitation have a 26 percent lower risk of cardiovascular disease-related death and an 18 percent lower risk of readmission at 1-year follow-up compared to those who don’t enroll. Despite these benefits, participation in cardiac rehabilitation programs remains low.

“The lack of and delayed referrals are contributing to low patient enrollment in CR/PR. Research has found that women are 12 percent less likely to be referred than men, and black, Hispanic, and Asian patients are 20 percent, 36 percent and 50 percent less likely, respectively, to be referred than white patients. The steps this legislation takes would bridge the gap between referral and the start of CR/PR, and help patients access proven services to help improve their health outcomes.

“We are grateful to Reps. Lewis and Smith for their continued work to improve the health of patients with cardiovascular disease. This legislation expands upon previous legislative victories to help wipe out the burden of heart disease and stroke in our nation.”

Medicaid expansion under the ACA, which began in 2014, led to one of the largest gains in health insurance coverage for non-elderly adults in the United States. Because cardiovascular disease and risk factors have a higher prevalence in uninsured people, researchers wanted to determine if Medicaid expansion had any meaningful effect in that population. by studying whether trends in cardiovascular mortality for middle-aged adults differed between states that did and did not expand Medicaid.

“This is one of the first large studies of its type to show that, with this round of Medicaid expansion, there might have been a population level mortality benefit for patients with cardiovascular disease,” said Sameed Ahmed M. Khatana, M.D., a fellow in Cardiovascular Disease at the Hospital of the University of Pennsylvania in Philadelphia. “We believe these findings will be helpful for policymakers and health policy researchers in trying to tease out the impact of this most recent round of expansion.”

The researchers examined statistics from 1,960 counties.

The researchers used data from the Centers for Disease Control and Prevention’s Wide-ranging Online Data for Epidemiologic Research mortality database to obtain county-level cardiovascular mortality rates for all individuals 45 to 64 years of age from 2010 to 2016. They used data from all states except Massachusetts and Wisconsin, which expanded Medicaid independently of the ACA. As of 2016, 29 states and the District of Columbia had expanded Medicaid eligibility, while 19 states had not. A total of 1,960 counties were included.

The researchers found:

There was an increase in health insurance coverage for low-income residents in counties in expansion states (19.8 percent) compared with counties in non-expansion states (13.5 percent).

Counties in states that expanded Medicaid had about four fewer deaths from heart disease per hundred thousand residents compared to states that didn’t expand Medicaid, which translates to approximately 1,800 fewer deaths per year in the areas that expanded Medicaid.

Counties with more residents living in poverty seemed to benefit most from the effect of the expansion.

The researchers also found counties that had the smallest increases in insurance coverage from 2010 to 2016 had the largest increases in cardiovascular death rates.

“We can’t necessarily say from our study that giving a person health insurance through Medicaid will save their life,” Khatana said. “However, our study does show that there perhaps were at least widespread benefits concentrated in certain groups, such as those uninsured or people with higher risk of cardiovascular disease, although we can’t say for sure it was a direct result of the Medicaid expansion.”

The commitment to increase patient safety came after a landmark 1999 study by the National Academy of Medicine (NAM) highlighted the prevalence of medical errors and made clear the need to decrease them.

A new study, published in the November 2018 journal Health Affairs, examines what’s happened since the research took place.

Conducting the newest study, researchers from the Center for Health Outcomes and Policy Research (CHOPR) of the University of Pennsylvania School of Nursing (Penn Nursing), looked into whether hospitals have implemented a key NAM recommendation: to improve nurse work environments and assure adequate nurse staffing. They also analyzed whether the changes corresponded to improved patient safety.

The findings were bleak: Between 2005 and 2016, only 21 percent of hospitals substantially improved their clinical work environments; 71 percent made no improvements and 7 percent experienced deteriorating work environments. But hospitals that improved their work environments saw their patient safety indicators improve as well, with favorable nurse and patient appraisals of patient safety increasing by 11-15%. Grades on patient safety remained the same for hospitals in which work environments remained the same, and favorable grades on patient safety fell by 19% in hospitals with worsening care environments.

Nearly 40 percent of patients said they did not always receive help quickly from hospital staff.

“A key recommendation of the National Academy of Medicine in 1999 for improving patient safety was to transform nurse work environments in hospitals to ensure adequate nurse staffing and clinical work environments that freed nurses to spend their time in direct patient care,” said lead author Linda Aiken, PhD, RN, the Claire M. Fagin Leadership Professor in Nursing, Director of the Center for Health Outcomes and Policy Research, and Senior Fellow at the Leonard Davis Institute for Health Economics at Penn. “Our recent study of nurses and patients suggests that those recommendations have not been uniformly adopted by hospitals.”

The study covered 535 hospitals in four large states and reports from 53,644 RNs and 805,881 patients who practiced or received care at these hospitals. Nearly 30 percent of hospital nurses in 2015-16 gave their hospitals unfavorable grades on patient safety, and 55 percent would not definitely recommend their hospital to a family member or friend who needed care.

Patients also expressed concern about quality and safety, with 30 percent reporting that they would not definitely recommend their hospital. Nearly 40 percent of patients said that they did not always receive help quickly from hospital staff, and nearly 40 percent more reported that medications were not always explained before they were given.

“Patients’ and nurses’ appraisals show patient safety in hospitals remains a concern almost 20 years after the NAM originally called for national action to reduce patient harm,” said Aiken. “Our findings show that clinicians continue to face challenging but modifiable work environments that interfere with their ability to implement safety interventions consistently. Improving work environments through organization and culture change is a comparatively low-cost intervention to improve quality of care and patient safety.”

The study also found that:

Over 80 percent of nurses rated the clinical work environments in their hospitals less than excellent.

Close to 30 percent of nurses gave their hospital an unfavorable grade on infection prevention.

Over 30 percent of hospital nurses score in the high burnout range on standardized tests.

Hospitals that significantly improved their care environments experienced much greater improvements in patient safety indicators and implementing a culture of patient safety than hospitals that did not improve clinical care environments as recommended by the NAM study.

Hospitals in which the work environment worsened exhibited a 25 percent decrease in the percentage of nurses saying that patient safety is a top priority of management.

The study, by the Good Thinking Society, a British charity that promotes scientific thinking, was published by The BMJ.

Because of the risk, there are now calls for crowdfunding sites to vet cancer appeals to help ensure that patients and their donors are not being exploited, writes journalist Melanie Newman in The BMJ.

Statistics collected by the society show that that since 2012 appeals on UK crowdfunding sites for cancer treatment with an alternative health element have raised the equivalent of $10 million. Most of this was for treatment abroad.

Figures from JustGiving, a leading online platform for personal charity campaigns, show that more than 2,300 UK cancer-related appeals were set up on its site in 2016, a seven-fold rise since 2015.

While the phenomenon has allowed less well-off patients to access expensive, experimental treatments that are not funded by the UK’s National Health Service but have some evidence of benefit, many fear it has also opened up a new and lucrative source of money for cranks, charlatans, and con men.

According to a news release from The BMJ, Good Thinking’s project director, Michael Marshall, said: “We are concerned that so many UK patients are raising huge sums for treatments which are not evidence based and which in some cases may even do them harm.”

Good Thinking now wants the crowdfunding sites to vet cancer appeals and “reject outright proposals that refer to specific drugs that have been discredited, extreme dietary regimes, intravenous vitamin C, alkaline therapy and other alternative treatments.”

“If these platforms [like JustGiving] want to continue to benefit from the goodwill of their users–and, indeed, to profit from the fees they charge each of their fundraisers–they have a responsibility to ensure that they do not facilitate the exploitation of vulnerable people,” Marshall said in the release.

Edzard Ernst, professor of complementary medicine at Exeter University, supports the move, pointing out that crowdfunding organizations already reject appeals involving violence or illegal activity, such as terror attacks.

GoFundMe, the platform that features most prominently in Good Thinking’s dataset, said it is already “taking proactive steps” in the U.S. to make sure users of its site are better informed. They will be doing the same thing globally over the coming months, they said.

JustGiving told The BMJ, “We don’t believe we have the expertise to make a judgment on this.”

In contrast, some argue that the very process of searching for alternative therapies can have a positive effect. Sarah Thorp, who set up a GoFundMe account to pay for her sister Andrea Kelly’s treatment at the Integrative Whole Health Clinic in Tijuana, Mexico, believes Andrea was helped as much by the feeling of being in control as by the treatments she received.

Andrea spent three weeks at the clinic at a cost of $21,000 and died just over a year after she returned.

The largest sums by far in Good Thinking’s dataset were raised for trips to the Hallwang Private Oncology Clinic in the Black Forest of southern Germany.

However, the clinic claims that some people have used Hallwang’s name to raise money but have never contacted the clinic or gone to it.

Some health professionals, including Professor Christian Ottensmeier at the University of Southampton, don’t think patients should be banned from visiting such clinics, but say careful conversations about the chances, the risk, and the costs, are essential.

Others, however, such as Patricia Peat, a former oncology nurse who has advised people to go to the Hallwang after visiting the clinic herself, says she has now stopped recommending it to her clients.

The Hallwang maintains that it never gives guarantees to patients and always provides thorough information on its alternative treatment strategies, which it says are state of the art.

Finally, Michael Marshall also points to the role of the media, whose reports on people with cancer often drive donors to the crowdfunding sites and encourage others to seek the same treatment.

“These reports may look like uplifting human interest stories, but they rarely highlight the dubious and pseudoscientific nature of some of the treatments involved or just how many of the success stories actually ended in tragedy,” he said. “If the media want to report on medical fundraising stories, they should seek the advice of qualified medical experts.”