AfPA’s Survey Hub

AfPA’s Survey Hub is a repository of attitudinal research on patient, physician and public opinions regarding healthcare access. As policymakers seek to balance costs, access and efficacy, AfPA Survey Hub provides key insights into the opinions and behaviors of healthcare consumers and providers.

This educational resource features publicly available survey research, focus group findings, online polls and commissioned studies.

Patients Indicate More Cardiovascular Education Needed

European Alliance for Patient Access, November 2019

Key Findings:

    • More than 65% of patients did not know with certainty how cholesterol levels are measured. 
    • Just 28% of patients indicated their primary health care provider has shared educational resources to help them understand more about cardiovascular health. 
    • Nearly 93% indicated that patients need more materials about managing cholesterol and cardiovascular health.

Rheumatologists Value Patient-Reported Symptoms Above Clinical Data

BMC Rheumatology, September 2019

Key Findings:

    • Regarding clinical treatment decisions, rheumatologists favored patient-reported information above objective data such as physical findings and test results.
    • The patient-reported information most valued by rheumatologists were symptoms (46%) and physical function (16%).  
    • Among symptoms, the most valued were patient-reported joint swelling, tenderness and morning stiffness.

Chronic Pain Robs Women of Quality of Life

HealthyWomen, September 2019

Key Findings:

    • Of women living with persistent or reoccurring pain, nearly all – 95% – said their pain keeps them from living a full and active life.
    • More than half of respondents (53%) say their pain interferes with their sleep.
    • Nearly half (48%) are treating their pain with opioids.
    • More than six in 10 (62%) women living with pain feel hopeless and/or helpless about their pain.

Men Less Knowledgeable about HPV Vaccine and Cancers Caused By Virus

JAMA, September 2019

Key Findings:

    • More than 70% of women surveyed knew about the HPV vaccine, which protects against several cancers, yet just about half of men were aware of the vaccine.
    • Among respondents under 26 years old, 30% of women and 60% of men did not know HPV causes cervical cancer.

AARP Members Support Rebate Rule Proposal

PhRMA, June 2019

Key Findings:

    • On first read, 86% of AARP members support regulatory reform that would require pharmacy benefit managers to pass along prescription drug rebates and discounts to Medicare beneficiaries.
    • More than seven in 10 (73%) still support the rebate rule even after learning that it could result in a health insurance premium increase of $3-$6 per month for seniors who do not receive low income subsidies.

Shared Decision-Making: Insights from Rheumatoid Arthritis Patients in Europe

European Alliance for Patient Access, May 2019

Key Findings:

      • Nearly all (98%) of patients agreed that patients and health care providers should jointly decide the best course of treatment.
      • 54% of patients find it difficult to talk to their health care provider about how rheumatoid arthritis affects their psychological well-being.
      • 98% of patients overwhelmingly see the need for techniques and strategies for making shared decisions with their health care provider.

Consumers Support Requiring Pharmacy Benefit Managers to Pass Along Savings

American Consumer Institute Survey, April 2019

Key Findings:

      • More than eight in 10 respondents (83%) would support a law that requires pharmacy benefit managers to lower patients’ prescription drug prices to reflect the rebates PBMs get from drug manufacturers.

Survey of Consumer Health Care Concerns

Consumers for Quality Care, April 2019

Key Findings:

        • A strong majority of Americans (84%) are concerned about the cost of health care – more so than paying for retirement, housing, college, and child care.
        • Eight in ten respondents would rather pay more on a monthly basis for a health plan that has comprehensive coverage with minimal fees when getting treatments.
        • Nearly all (91%) say consumers need to better understand the costs associated with health care and three-quarters say medical bills are confusing to understand.

Understanding Voters’ Views on Prescription Drug Costs

Biotechnology Innovation Organization, April 2019

Key Findings:

      • Prescription drug coverage is an important insurance benefit for 95% of voters.
      • A strong majority of voters (76%) support legislation that would cap or limit what seniors in Medicare Part D pay out-of-pocket for prescription drugs.
      • A plurality of voters (46%) think it is most important policymakers lower the cost people pay out-of-pocket for their medicines.

CDC Guideline Having ‘Horrendous’ Impact on Pain Patients

Pain News Network, March 2019

Key Findings:

    • Over 85 percent of patients say the guideline has made their pain and quality of life worse.  Nearly half say they have considered suicide because their pain is poorly treated.
    • Respondents were nearly unanimous (96 percent) in their agreement that the CDC guideline has been harmful to pain patients and that is should be revised (97 percent).
    • Eight out of ten patients said they are being prescribed a lower dose or that their opioid prescriptions were stopped.

Kaiser Family Foundation Health Tracking Poll: Prescription Drugs

Kaiser Family Foundation, February 2019

Key Findings:

    • Among those currently taking prescription drugs, one-fourth of adults (24 percent) and seniors (23 percent) say it is difficult to afford their prescription drugs including about one in ten (overall and among seniors) saying it is “very difficult.”
    • A majority of adults, including seniors, are in favor of many policy options aimed at curbing prescription drug costs.  
      • Among the most popular policies are making it easier for generic drugs to come to market (88%).

A Study of the Qualitative Impact of Non-Medical Switching

Alliance for Patient Access, February 2019

Key Findings:

Non-medical switching most often occurs due to the insurer:

  • Restricting its formulary to exclude coverage for the patients’ original medicine (40%) or
  • Altering coverage in a way that spikes patients’ out-of-pocket costs (33%).   

Patients report a slew of consequences, from medical changes to increased health care utilization.

    • Nearly 40 percent of patients said the new medicine was not as effective
  • Almost 60 percent experienced a complication from the new medication, such as a reemerging disease symptom, a new side effect or an interaction with another medication they take.

Non-medical switching undercut patients’ relationships with their health care providers:

  • My health care provider and I had already decided how to treat my condition, and the insurer’s switch disrupted our plans (73%)

The insurer took control of a decision that rightfully belongs to my doctor or health care provider (86%).

Read abstract.

National Survey of Patients’ Attitudes Toward Gout

Alliance for Gout Awareness, February 2019

Key Findings:

  • Gout is a serious disease (97%) that could lead to other health problems (90%)
  • Most people don’t know gout is a form of arthritis (93%)
  • People with gout are often too embarrassed to talk about the disease (52%)
  • People look down on those with gout (41%)
  • It’s hard to get proper treatment for gout (73%). 

PPPH Consumer Protection Research Results

Partnership to Protect Patient Health, November 2018

Key Findings:

    • 78% of medical professionals have seen an ad for medication they prescribe.
    • 58% of providers report that their patients stop taking their medication after seeing advertising without consulting them.
  • 25% of patients who have seen attorney advertising for their medication stopped taking it entirely as a result. 

Provider Perspectives on Health Insurance Barriers that Harm Patients

Aimed Alliance, October 2018

Key Findings:

    • 87% of physicians agree that health insurers restrict their ability to prescribe individualized treatment.
    • 79% of physicians agree that health insurers have a negative affect on patient care.
  • 90% of physicians agree that they had diminished time for patient care due to the increased administrative burdens from benefit utilization practices. 

RSV Awareness: A National Poll of Parents & Health Care Providers

National Coalition for Infant Health, October 2018

Key Findings:

    • 96% of health care providers agree RSV is the “most serious and dangerous” illness for premature babies.
    • 22% of parents consider themselves “very well prepared” to prevent RSV.
  • 77% of health care providers agree barriers to access and denials from insurance companies limit patients’ ability to get preventative treatment. 

National Survey of Attitudes Toward Cardiovascular Treatment & Access

Partnership to Advance Cardiovascular Health, October 2018

Key Findings:

    • 80% agree that changing diet and exercise patterns isn’t enough to lower some people’s LDL cholesterol to a safe level.
    • 82% agree that for some people, statins alone don’t lower LDL cholesterol enough.
  • 97% agree that physicians, not health insurers, should decide which prescription medications patients need.

Women’s Attitude Toward Headache and Migraine

Headache Migraine Policy Forum, September 2018

Key Findings:

    • 97% agree that migraine and headache disorders strain relationships and disturb family life.
    • 93% agree that people with migraine are often dismissed as exaggerating their symptoms or not feeling severe pain.
    • 82% agree that people trivialize migraine because it predominantly affects women.
  • 97% agree that physicians and their patients, not health plans, should decide which treatment is used to treat a migraine .

Texas Survey of Attitudes toward Non-Medical Switching Legislation

WPAi, September 2018 – A poll of 500 likely Texas voters revealed that people want consistent health plan coverage for their prescription medications – and they expect legislators to protect that coverage. According to poll results:

    • 88% agree that patients should have consistent coverage of their medications
    • 85% support legislation that ensures continuity of care, with 67% supporting it “strongly”
    • 36% have directly, or through a personal relationship, experienced non-medical switching
  • Nearly 7 out of 10 are more likely to support a candidate for the state legislature who backs legislation restricting non-medical switching.

Notably, concerns about non-medical switching transcend party lines:

    • 82% of Republicans,
    • 92% of Democrats, and
  • 91% of independents support legislation to limit non-medical switching.

National Survey of Public Attitudes Toward Balanced Pain Management

Alliance for Balanced Pain Management, July 2018

Key Findings:

    • 80% agree that pain is undertreated.
    • 88% agree that effective pain management addresses related conditions like depression and anxiety.
    • 60% agree that limited coverage for integrative care forces patients to use opioids to manage pain.
  • 74% agree that health plans don’t provide adequate coverage for integrative pain care.

New Data Show Patients Out-of-Pocket Costs are Rising Faster than their Insurers’ Costs

Kaiser Family Foundation, July 2018Key Findings:

    • Average patient payments toward deductibles rose from $151 to $417, an increase of 176 percent.
    • Average patient payments toward coinsurance — a percentage of costs a patient is responsible for paying out of pocket — rose from $149 to $249, an increase of 67 percent.
  • Average patient payments toward copays – a fixed cost – decreased 38 percent from $225 to $140.

Voter Survey on Part D Reforms

National Community Pharmacists Association, July 2018

Key Findings:

    • 92% agree that seniors should have access to lower co-payments by ensuring seniors can obtain prescriptions from the pharmacy of their choice
  • 93% agree that insurance companies should directly pass discounts they can negotiate with drug companies to seniors.

New York Patient Sentiment Toward Non-Medical Drug Switching

Creaky Joints, May 2018

Key Findings:

  • 64.8% reported their insurance company switching their medication for non-medical reasons
  • 86.1% reported now paying more out of pocket for prescribed medications.
  • 92.9% reported the medication they switched to worked worse than their original prescribed medication.

Physician Poll: 340B Program Being Inappropriately Used, Allowing Hospitals to Profit

Institute for Patient Access, May 2018Key Findings:

  • 44% of physicians think the 340B program is being inappropriately used to purchase discounted medicines to treat patients who are not low income or indigent, allowing participating hospitals to profit.
  • 46% of physicians say that patients have not benefitted from lower pharmaceutical costs because of the 340B program.

2017 AMA Prior Authorization Physician Survey

American Medical Association, March, 2018

Key Findings:

  • 92% of physicians report a delay in care for their patients due to prior authorizations.
  • 61% of physicians report a significant negative impact on patient clinical outcomes due to prior authorization.

Kaiser Tracking Poll Finds Health Care Costs Top Issue Among Voters, February, 2018

Key Findings:

  • Health care costs is the health care issue voters want to hear about from 2018 candidates.
  • Health care costs is the top issue mentioned by Democratic voters (16 percent) and independent voters (25 percent), as well as one of the top issues mentioned by Republican voters (22 percent).

Survey finds physicians and patients view high-value care differently

Modern Healthcare, December, 2017

Key Findings:

  • For patients, “the top indicators of high-value care for patients were affordable out-of-pocket costs, the ability to schedule a timely appointment, confidence in the provider’s expertise and that the office was conveniently located.”
  • For physicians, “the best indicators of high-value were that they knew and cared about their patient, ordered the right labs and exams, their patient’s health improved and they were able to spend a sufficient amount of time with their patient.”

Research!America Survey On Public Perception Of Clinical Trials

Research!America, August, 2017

Key Findings:

  • 47% strongly agree health care professionals should discuss clinical trials with their patients diagnosed with a disease
  • 48% somewhat agree that taking part in clinical trials is as valuable to our health care system as giving blood

Survey Finds Low Awareness About Clinical Trials

SubjectWell, August, 2017

Key Findings:

  • Half (50%) of all respondents were not aware of clinical trials
  •  Only 4% have ever participated in a clinical trial
  • 49% hold neutral perceptions of clinical trials

Survey Results Show Eighty Percent of Rheumatoid Arthritis Patients Report Life-Altering Pain Daily or Multiple Times a Week, Despite Treatment

Honestly RA, February, 2017

Key Findings:

    • 80 percent of rheumatoid arthritis patients experience pain daily or multiple times per week
    • 64 percent say it keeps them away from daily activities and celebrations, even after treatment
  • Patients have tried an average of more than four prescription medications in the last five years

Survey Finds CDC Opioid Guidelines Hurting Patients

Pain News Network, March, 2017

Key Findings:

    • 90% of surveyed said the CDC guidelines have not improved the quality of pain care
  • 84% of surveyed said the CDC guidelines have not been successful in reducing opioid abuse and overdoses

Pew: Vast Majority of Americans Say Benefits of Childhood Vaccines Outweigh Risks

Pew Research Center, February, 2017

Key Findings:

    • 82% of U.S. adults say healthy children should be required to be vaccinated for measles, mumps and rubella to attend school because of the potential risk to others
  • 73% of U.S. adults say medical scientists should have a major role in making decisions about policy issues related to childhood vaccines.

American Medical Association Prior Authorization Survey

American Medical Association, December, 2016

Key Findings:

  • 75% of physicians said prior authorization requests were a “high” or “extremely high” burden on their practices
  • 90% of the survey respondents reported the prior authorization process delayed necessary care for patients.

Opioid prescription changes

SERMO for the Boston Globe, December, 2016

Key Findings:

  • Physician survey shows fewer opioids being prescribed
  • 38% of family medicine physicians say patients have been hurt by the reduction in prescriptions

New Survey by Protect My Doctor and Me explores public opinion on changes to Medicare

Morning Consult, November, 2016

Key Findings:

  • 8 in 10 voters (84%) trust doctors the most to make decisions about treatments and medicines
  • 3 in 4 (75%) say “The government needs to find ways to keep the promise and integrity of Medicare without cuts to the program” comes closest to their view
  • Majorities of voters oppose controlling Medicare spending by limiting access to care or to certain medicines and treatments

Physician Survey About Biosimilar Naming Finds Strong Support for Meaningful Suffixes

Biologics Prescribers Collaborative, November, 2016

Key Findings:

  • 80 percent of physicians preferred a meaningful, distinguishable suffix
  • More than half of physicians, 53 percent, said they would feel more confident prescribing a biosimilar if the product contained a meaningful suffix
  • More than 2/3 of physicians were also interested in learning more about biosimilar clinical trial data

Deloitte’s 2016 Consumer Priorities in Health Care Survey – Health plans: What matters most to the health care consumer?

Deloitte, October, 2016

Key Finding:

  • Most important cluster: Personalization expected via providers Our study revealed that personalized experiences with providers are the most important interactions that consumers have with the health care ecosystem. Consumers want to be heard, understood, and given clear directions through a personalized health care experience. Providers are best positioned to deliver on these desires, and interactions that fit into this cluster ranked almost three times as high as any other set of interactions in our study.

Patients, Their Families Concerned About Health Care

Partnership to Fight Chronic Disease, September, 2016

Key Findings:

  • 77% report that they or someone they know has had trouble using their health insurance in the past year
  • 73% say it’s very important to have more transparency when it comes to costs at the hospital
  • 43% say costs have increased in the past year
  • 27% say health insurance premiums are costs that impacted their family’s budget the most

Vaccine Delays, Refusals, and Patient Dismissals: A Survey of Pediatricians

Pediatrics, August, 2016

Key Findings:

  • The proportion of pediatricians reporting parental vaccine refusals increased from 74.5% in 2006 to 87.0% in 2013
  • Pediatricians perceive that parents are increasingly refusing vaccinations because parents believe they are unnecessary (63.4% in 2006 vs 73.1% in 2013; P = .002)
  • A total of 75.0% of pediatricians reported that parents delay vaccines because of concern about discomfort, and 72.5% indicated that they delay because of concern for immune system burden

Survey finds majority would participate in Precision Medicine Initiative study

PLOS ONE, August, 2016

Key Findings:

  • 79% of respondents supported the proposed study
  • 54% said they would definitely or probably participate if asked
  • The opportunity to learn health information about one’s self from the study appears to be a strong motivation to participate

Medicare Today Survey explores Medicare Part D recipients’ opinions of their prescription drug coverage

Medicare Today, July, 2016

Key Findings:

  • 88 percent of voters say they are satisfied with their prescription drug coverage
  • 84 percent of voters say it was important to them to have a variety of plans to choose from

Kaiser Health Tracking Poll: July 2016

Kaiser Family Foundation, July 15, 2016

Key Findings:

  • 85 percent of Republican voters and 93 percent of Democratic voters say their own political party best represents their views on health care.
  • 38 percent surveyed said health care costs are the top health issue

Deloitte Survey Finds Low Physician Awareness and Many Needed Changes by Physicians for Medicare’s MACRA Program

Deloitte, July 13, 2016

Key Findings:

  • 50% of non-pediatric physicians surveyed have never heard of MACRA (Medicare Access and CHIP Reauthorization Act of 2015)
  • 32% of physicians surveyed only recognize the name MACRA
  • Half of physicians surveyed are unaware of significant payment changes that begin January 2017

In A Politically Polarized Year, Poll Finds Wide Agreement Among Voters On One Healthcare Agenda

Galen Institute and Center Forward, June 23, 2016

Key Findings:

  • Nearly two-thirds of voters (65%) want the next president to prioritize medical discovery during his/her first 100 days in office
  • Overwhelming support for ongoing access to new treatments and cures through Medicare and private health plans, for modernizing the Food and Drug Administration, and facilitating new public-private partnerships

Doctors far from ready for value-based care system, survey shows

Benefits Pro, June 15, 2016

Key Findings:

  • In a survey of 450 physicians and health care executives conducted by Quest Diagnostics of Madison, New Jersey, and Inovalon of Bowie, Maryland, 74 percent say the quality measures are too complex, suggesting they often don’t know what exactly is expected of them.
  • While just over half (57 percent) of the 150 health care executives said they favored a value-based system, only 33 percent of the 300 physicians polled agreed.

2016 CancerCare Patient Access and Engagement Report

CancerCare, May 11, 2016

Key Findings:

  • Only about one-half of the respondents reported understanding their health insurance coverage for their cancer care “completely” or “very well.”
  • Many respondents used care-altering strategies to reduce costs. Twenty-nine percent said they skipped doctors’ appointments; 38% postponed or did not fill drug prescriptions while 34% skipped doses; 30% ordered medications online from sources outside the U.S.; and 31% cut oral medications in half.

Survey of Non-Group Health Insurance Enrollees, Wave 3

Kaiser Family Foundation, May 20, 2016

Key Findings:

  • About 40 percent of people who’ve purchased health insurance plans through a state or federal marketplace say they’re dissatisfied with their premiums.
  • 46 percent say they’re unhappy with their deductibles.

Americans Support Patient-Centered Solutions, Oppose Government Determining Value

Partnership to Improve Patient Care, April 12, 2016

Key Findings:

  • 8 in 10 say that doctors and patients should be able to decide the best course of treatment without government interference.
  • 9 in 10 voters agree that health care decisions should be made between doctors and patients.
  • 86 percent of voters think it is important to maintain the current Medicare safeguard that prohibits the government from using cost-effectiveness in making coverage or payment decisions because it may discriminate against seniors and people with disabilities.

Kaiser Health Tracking Poll March 2016

Kaiser, March 2016

Key Findings:

  • Nearly half of the uninsured (48 percent) polled say they have tried to get coverage but cost was prohibitive.

Patients’ Perspectives on Health Care in the United States

Survey from National Public Radio, the Robert Wood Johnson Foundation, and the Harvard T.H. Chan School of Public Health, February 2016

Key Findings:

  • 42% of respondents say they spent all or most of their personal savings on medical bills
  • 52% say healthcare costs are a “major problem”

New Kaiser/New York Times Survey Finds One in Five Working-Age Americans With Health Insurance Report Problems Paying Medical Bills

Kaiser/New York Times, January 5, 2016

Key Findings:

  • Among the insured with medical bill problems, 63% report using up most or all their savings and 42% took on an extra job or worked more hours
  • 62 percent of those who had medical bill problems say the bills were incurred by someone who had health coverage at the time (most often through an employer)
  • Among the insured with problem medical bills, 26% say they received unexpected claim denials

More Americans Say Health Premiums Went Up Over Past Year

Gallup Poll Social Series, December 4, 2015

Key Findings:

  • 36% who pay premiums say costs went up “a lot” — a new high
  • Fewer insured Americans say employers pay full cost

Voters Trust Physicians, Wary of Insurance Companies, Worried about Costs but Value Access

Alliance for Patient Access, December 2015

Key Findings:

  • Survey respondents trust their physicians to decide effective course of treatment
  • Survey respondents are wary of insurance companies and health plans directing care or limiting treatment options
  • While worried about costs, survey respondents value access to effective therapies and medical innovations

Cost Still Delays Healthcare for About One in Three in U.S.

Gallup Poll Social Series, November 2015

Key Findings:

  • Figure has not fallen since ACA reforms
  • Americans more likely to put off care for serious condition
  • 31 percent of those surveyed said they or a family member have delayed treatment due to cost

What you always wanted to know about patients

Survey for World Arthritis Day, October 2015

Key Findings:

  • 82% of those surveyed said patient organizations should focus on spreading information to patients
  • 62% of those surveyed said patient organizations are needed to advocate for policy with lawmakers

Pharmacists Support Distinguishable Names for Biosimilars & Transparent Labeling

Alliance for Safe Biologic Medicines, October 2015

Key Findings:

  • 68% of pharmacists say “Yes,” biological and biosimilar medicines should have distinct non-proprietary names
  • 81% say prescribing information or “label” should indicate whether a medication is a biosimilar
  • 88% say prescribing information should indicate if the biosimilar is interchangeable with its biological reference product
  • 76% say prescribing information should explain for which approved uses a medication was studied and for which it was extrapolated an indication from its originator product
  • 69% say data in the prescribing information should be identified as originating from studies on the biosimilar or on the biologic

Patients Describe Cancer Care as Expensive and Hard to Access

Cancer Support Community, March 2015

Key Findings:

  • 22% of patients reported delays in accessing care
  • 47% reported paying more for health care in the last 12 months, which they attributed to:
    • Insurance premiums (61%)
    • Deductibles (46%)
    • Co-pays (45%)
  • 37% reported being concerned about bankrupting their families

One in Four Patients Initially Denied Access to Hepatitis C Cures

Yale University School of Medicine, August 2015

Key Findings:

  • Of patients prescribed sofosbuvir/ledipasvir to cure them of hepatitis C:
    • 77% received initial approval; About 23% received initial rejection
    • Nearly 14% of those initially rejected did receive treatment through the appeals process
    • Patients had to wait an average of 26 days for a final approval or rejection decision on coverage

Patients Consider Non-Opioid Therapies Ineffective

Pain News Network & The Power of Pain Foundation, October 2015

Key Findings:

  • 95% patients agree that new CDC guidelines discriminate against pain patients
  • 1/3 patients said exercise, weight loss, or cognitive behavioral therapy had helped relieve their pain
  • 2/3 patients said exercise, weight loss, or cognitive behavioral therapy “did not help at all”
  • Only 7% patients said their insurance covered most or all of alternative therapies such as exercise, weight loss, or cognitive behavioral therapy

Patients with Lower Incomes Less Likely to Participate in Clinical Trials

The JAMA Network Journals, October 2015

Key Findings:

  • Patients with annual household income below $50,000 had 32 percent lower odds of trial participation than higher income patients
  • Only 11% of patients with household incomes below $20,000 participated in clinical trials

Severe Asthma Disrupts Patients’ Everyday Lives

Boston Scientific, September 2015

Key Findings:

  • 32% patients reported that their severe asthma negatively affected their social life
  • 23% patients reported it affected their work life
  • 18% patients reported it affected their family life

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