Choosing Providers for Select Services and Procedures · Database (APD) that is reflective of the...

March 2019

Choosing Providers for Select Services and Procedures: Consumers’ Experiences and PreferencesMaya Scherer, MPH | Linda Weiss, PhD

The New York Academy of Medicine | Center for Evaluation and Applied Research

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INTRODUCTIONThe purpose of this report is to assist New York State (NYS) in the design of an All Payer Database (APD) that is reflective of the priorities and needs of healthcare consumers. It is one of a series of reports from The New York Academy of Medicine describing discussions with consumers focused on healthcare choices and the processes used to make those choices. This report describes findings from interviews with 30 NYS healthcare consumers who used one or more healthcare services described in a previous Academy report1 and which fall into the following categories: (1) services traditionally seen as “shoppable” by healthcare payers and policymakers; (2) services of notable interest to healthcare consumers based on consumer-focused research; and (3) services that align with NYS’s broader health agenda, including advanced primary care models and the prevention and management of chronic diseases. Through these interviews, we sought to gain insight into patients’ experiences when searching for provider information before seeking care, and their views on the most valuable cost and quality information for decision-making regarding the use of specific services and procedures.

1 “Shopping for Health Care Good and Services: A Selected Review of Consumer Information,” Center for Evaluation and Applied Research, The New York Academy of Medicine, March 2019.

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3Choosing Providers for Select Services and Procedures

METHODSInterviews were conducted with individuals who: (1) live in New York State; (2) received one of the identified services or procedures in the past five years (see Table 1); (3) searched for quality information before choosing a provider; and (4) used a website with data about provider quality when making their choice. Participants were recruited online through Craigslist and Facebook advertisements and completed a screening form to ensure they met the eligibility criteria. Each interview took approximately one hour and followed a topic guide (Appendix I) that focused on participant experiences in searching for a provider, sources of information used, cost and quality indicators considered, and recommendations for providing healthcare information to consumers for decision-making purposes. Interviewees also completed a brief demographic questionnaire (Appendix II). The research protocol was approved by the Institutional Review Board of The New York Academy of Medicine and participants received $50 in appreciation of their time and insights.

Service / Procedure Total # of interviews

Colonoscopy 3MRI 2Sleep Study 2Cataract Surgery 3Hip/Knee Surgery 3Mammogram 2Dental Checkup 2Obstetrics 2Mental Health 3Physical Therapy 3Urgent Care 2Diabetes Management 3

30

TABLE 1. INTERVIEWS COMPLETED

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Participant Characteristics Slightly over three-quarters (77%) of participants were female. They ranged in age from 18-74. Sixty-seven percent were white, 23% were Black or African American. Approximately 43% were employed full-time, 20% were employed part-time, 27% were not working, and 10% were retired. Forty percent said their healthcare deductible was $100 or less; almost one-quarter reported that they did not know their deductible (note: even among those reporting a deductible, it was apparent that participant understanding of the term was inconsistent).

Participants lived in 30 different zip codes across New York State (not shown). Approximately 37% of participants reported that they are “very worried” about being able to pay the medical costs for normal healthcare, or for a serious illness or accident (see Table 2).

TABLE 2. FOCUS GROUP DEMOGRAPHIC CHARACTERISTICS (N=30)

N (%)GENDER

Female 23 77%

Male 7 23%

AGE

18-34 6 20%

35-49 8 27%

50-59 7 23%

60-74 9 30%

RACE / ETHNICITY (multiple responses allowed)

White 20 67%

Black/African American 7 23%

American Indian or Alaskan Native 2 7%

Asian 2 7%

Hispanic/Latino 2 7%

Other 1 3%

EDUCATION

High school graduate or GED 2 7%

Some college but no degree 9 30%

College degree or higher 19 63%

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4 5Choosing Providers for Select Services and Procedures

N (%)

WORK STATUS

Employed full-time 13 43%

Employed part-time 6 20%

Not working 8 27%

Retired 3 10%

Student 1 3%

HEALTH INSURANCE DEDUCTIBLE

$0 - $100 12 40%

$101 - $500 4 13%

$501 - $1000 4 13%

$1001 - $2500 2 7%

$2501 + 1 3%

Don't Know 7 23%

CONCERN ABOUT BEING ABLE TO PAY MEDICAL COSTS OF A SERIOUS ILLNESS/ACCIDENT

Very worried 11 37%

Moderately worried 12 40%

Not too worried 5 17%

Not worried at all 2 7%

CONCERN ABOUT BEING ABLE TO PAY MEDICAL COSTS OF NORMAL HEALTHCAREVery worried 11 37%




CONCERN ABOUT BEING ABLE TO MAINTAIN STANDARD OF LIVING YOU ENJOYVery worried 14 47%




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FINDINGS The search process

Consistent with the eligibility criteria and recruitment approach, the great majority of participants reported using the internet to search for information about providers before seeking care. Approximately half of participants said they only searched the internet after they received the name of a provider through a personal recommendation or referral from another provider. In these cases, the internet provided information to confirm the quality of these personal or professional recommendations. Similarly, a few participants first looked for providers who were in their insurance networks, then searched the internet for more information on provider quality.

I did the search—of the ones that were referred to me, I did just simply type those and go to their own website and then those comparison sites. I did also search just more generally, like “mental health provider.” (mental health services patient)

[I chose my doctor because] my best friend’s daughter-in-law’s mother used him. … She had her two hips done the year before, and I did research on my doctor, too. And, he had very high recommendations, very highly qualified. (hip replacement patient)

First I went on the Emblem Health site to see who was in network. Then I looked them up on—I forget which rating site I used for the doctor to see how many stars and what the patient comments were. (colonoscopy patient)

A small subset of participants described following up on recommendations or internet research with a visit to the provider to personally assess quality.

I spoke to a cousin of mine that had surgery there. And I knew of some friends who had children in the pediatric ward for broken bones; things like that. So once I decided [that] this is gonna be the hospital, that's when I started looking for the doctors … and that's when I interviewed or met the three doctors, and decided. (knee replacement patient)

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Approximately two-thirds of participants named specific healthcare consumer websites they used (see Table 3) in addition to more general search and rating sites like Google and Yelp to find quality information about providers before seeking care. However, around half of those who cited specific websites had difficulty remembering the names of those sites, and a few made reference to website names that approximate—but are not actually—consumer websites, such as “Zoo Doctor” or “DoctorGrades.”

I went just to Google … then I just typed in "diabetes," and different things came up. (diabetes management patient)

I usually go to whatever that is, Doctor Grades or Med Grades, or see if there were any lawsuits, just see how he’s rated by other patients. … Whatever sites come up, you punch in the doctor’s name, and then you read the reviews. Recently, I think there’s a website called Med Grades or Medical Grades. I forget. It’s some catchy website. (cataract surgery patient)

About one-third of participants described their search as motivated by prior experiences with a provider in the same field. In most of these cases, the prior experience was a poor one, leading the participant to seek out quality information in order to avoid repeated problems. For some, this prior experience shaped the kind of information they were looking for, such as procedure protocols or type of equipment used.

TABLE 3. MOST COMMONLY REFERRED TO CONSUMER WEBSITES

HealthgradesDocfindyZocDocWebMDHealthline

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I was going to another facility, and I wasn’t satisfied with the care that I had gotten there. I didn’t like the personnel. I didn’t like how the mammogram was done. I was just not happy with it, so I did start research. (mammogram patient)

After I've been to [a provider], I am more likely to judge it than before, because before I don't know what's going on. Afterward, if I go to one that says I can bring my cane into the [MRI] room, I'm not really impressed by that. Because I have had my cane and my brace drawn into the machine before. (MRI patient)

Quality indicators: what participants care about

Participants described a number of quality indicators they used to both select a provider and evaluate provider quality after receiving care. The majority of indicators described focused on provider characteristics or those of the facility or office where the provider practices. Common indicators mentioned, regardless of service or procedure, were as follows:

Provider characteristics • Education • Years in practice • Age • Hospital affiliation • Malpractice history • Licensure and certifications • Specialty and/or subspecialty • Quality of provider communication

Setting characteristics • Wait time • Location (hospitals in major metropolitan areas were sometimes considered better) • Office hours • Cleanliness • Staff courtesy and amicability • Professionalism

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Information on provider background, including the perceived caliber of medical school attended, specialization, years in practice, certification, and malpractice history provided participants with what they identified as objective information about knowledge, experience, and quality. Malpractice lawsuits were often considered to be indicators of poor quality of care, while for many participants, affiliation at a well-regarded hospital suggested good physician quality.

You need to know their affiliation so you can judge what quality of education they have. (sleep study patient)

Additionally, a couple of participants expressed concern about provider conflict-of-interest and wanted to know in advance whether their doctor held any financial stake in the facilities to which patients were referred.

I want to know if the person has a financial interest or any sort of conflict of interest in pushing one facility over another. … They may give you a positive diagnosis just so they can get you to do a sleep study in their facility and they could skim off of you five different ways. (sleep study patient)

Participants also consistently associated good quality care with good provider communication. Many participants wanted a provider who took the time to explain healthcare processes and procedures, listen to patient concerns, and answer questions.

I was very impressed with his demeanor, his explanation and everything, so that is why I picked him. (colonoscopy patient)

[I like] that she listens to me, and then she gathers comprehensive history about my pregnancy, explains to me prenatal care, answers a lot of my inquiries. (obstetrics patient)

Information about provider setting was important for assessing convenience (e.g., wait times, distance from home or work) and the quality of the experience overall (e.g., professional and well-run office). Setting characteristics were also perceived to reflect the quality of care. For example, the cleanliness of the office suggested an attention to detail necessary for good quality patient care.

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If they're cutting corners in the front room by not keeping it properly clean, then are they cutting corners when they're reading the [MRI] and not looking at everything? I know a lot of this is subjective, but it's what I do. It's the only thing I've found that I can count on for information. I wish there were more. (MRI patient)

Use of different data—and sources—reflected variability in the attributes of interest. For more objective information, such as education and affiliation, basic facts were sufficient. For more nuanced provider qualities, such as communication skills and professionalism, participants mostly relied on patient reviews and ratings.

My judgment on quality has to do how they run their office and how he or she as a surgeon acts and their professionalism. That’s not reflected on anything that I can check on—as far as I’m concerned—except people’s opinions of them. That was the best I could do. (cataract surgery patient)

Quantitative data on healthcare quality Few participants said they used quantitative data about quality to make decisions about where to go for care. Most said they did not know such data were available and it had not occurred to them to look.

Honestly, I didn’t research that kind of [quantitative] stuff. I didn’t come across anything. ... I think that maybe this type of information that we're looking for is still like in the early stages where you really don’t find that many websites with it. (cataract surgery patient)

Although most participants said it would be helpful to have quantified data available when making a decision about healthcare, perceptions varied. Some services or procedures, such as colonoscopy and diabetes management, were described as too straightforward to necessitate detailed information for decision-making. In addition, several participants conveyed skepticism about the value of data in general and expressed concerns about comprehension and data availability.

Quantifiable data just doesn’t mean anything to me. … I don’t think you can measure something like that. … If you have a hundred diabetics and here you

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have a 65 percent rate of people going from insulin to non-insulin, well, you know, it could be that like those people either they followed what they were supposed to do and the other 35 didn’t or the other 35, maybe their body—maybe just doesn’t work for them. I mean, it’s not an exact science, so I don’t go by data like that. (diabetes management patient)

I'm a teacher, I'm not a medical professional and trying to read through some of the terms and technology and statistics that I saw, I found a little bit confusing. … I felt frustrated searching; I felt very frustrated. (obstetric patient)

Two participants who did look for quantified information—a hip replacement patient who considered infection rates and an obstetrics patient who researched cesarean section rates—described using that information to make a decision.

We had questions when trying to decide which hospital we wanted to deliver at, and [my husband] looked at that information as well as he looked at the numbers regarding cesareans. He stated one of the doctors that I was considering had a very high rate. That immediately knocked him out for both of us. (obstetric patient)

Service/Procedure-specific quality indicators For each service and procedure discussed in the interviews, participants described several quantitative and qualitative indicators they considered relevant to quality of care. These indicators (see Table 4) included information participants looked for prior to receiving care, as well as information that they realized, after the fact, would have been helpful to know in advance.

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TABLE 4. QUALITY INDICATORS FOR SPECIFIC PROCEDURES AND SERVICES

COLONOSCOPY• Rate of bleeding post-colonoscopy• # of colonoscopies performed• Rate of return for follow-up colonoscopy

MRI• Type of MRI performed (open vs. closed)• Accuracy reading results• Effective speed and transfer of MRI results to the patient’s provider• Time spent on MRI (not rushed)• Provider conflict of interest regarding test facility profits• # of patients seen• # of referrals to follow up care• Affiliation with a major medical institution (indicating greater volume and therefore more experience identifying abnormalities)• Type and characteristics of MRI machines used, and # available• Weight capacity of MRI machine (to accommodate obese patients)• Doctor and facility affiliation with MRI provider

SLEEP STUDY• Accuracy of diagnoses• Type of providers on staff (doctors vs. nurses vs. technicians)• Provider conflict of interest regarding test facility profits• # of patients seen • Specialty in specific sleep problems

CATARACT SURGERY• # of surgeries performed• Surgery performed in a hospital versus outpatient center• The surgeon does post-surgery follow up visit him or herself• Success rate (vision regained, 20/20 vision)• Complication rate (loss of an eye)

HIP/KNEE• Specialization in the particular joint (hip/knee)• Infection rate

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• # of surgeries performed• Rate of return to the same doctor (because people with joint replacements usually have to get more than one)• # of patients• Success rate

MAMMOGRAM• Effective data sharing between mammogram facility and doctor• Pain associated with mammogram procedure• Patient access to records and results• Accuracy of results• Proactive approach to follow up of abnormal results

DENTAL CHECKUP• Pain management approach• Attention to detail (for cosmetic work)• Infection rate• Complication rate

OBSTETRICS• Provider experience with high-risk pregnancies• Provider experience with post-partum complications• Hospital rate of cesarean delivery• Care coordination between OB and care received for other conditions• Delivery hospital infection rate• # of babies delivered

MENTAL HEALTH• Care coordination between mental health and physical healthcare providers• Multiple kinds of services available in one place (e.g., individual therapy, group therapy, psychiatry, prescription capabilities)• Average length of treatment• Expertise in prescribing medication combinations• # of return patients• Rate of hospitalizations

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PHYSICAL THERAPY• Pain management and treatment options• Machine type, availability, and wait times• Use of updated PT methods and approaches• Rate of return patients

URGENT CARE• Average length of care episode• Availability of appropriate specialist/provider• List of services/health issues treated

DIABETES MANAGEMENT• Frequency of A1c testing• Variety of services available (e.g., individual, group support, dietician)• Specialty in endocrinology

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Although the details differ by service and/or procedure, the indicators generally focused on two areas: 1) data and practices that predict positive health outcomes (e.g., infection rate, volume of procedures/services, procedure protocol) and 2) those that represent the quality of the patient experience (e.g., care coordination, pain management, and co-location of services).

One of the doctors I was going to use, I found out his infection rate was higher than usual. You know, why subject yourself to a doctor that might not be as careful during the surgeries? (hip surgery patient)

[My previous doctor] was only doing [A1c testing], at the end, maybe once a year. That’s not good … because if my A1c was changing, if it was going up, let’s say, and if it was going up, how would I know until the next year? It could have gotten progressively worse. (diabetes management patient)

I really liked that they had everyone available under one roof. They’ve got the individual therapy, they’ve got group therapy, and they’ve got prescribers all at the same place. (mental health services patient)

Information on cost of care

Many participants said they did not search for information on cost because, for most, care was covered by insurance. Additionally, some participants said they did not look into cost because they prioritized their need for appropriate and timely healthcare over the cost of the service itself.

Because I have Medicare, I knew they were going to foot most of the bill. I wasn't too, too worried about the cost and things like that. Where a person who has regular insurance, and had a large deductible, is in trouble financially, you know. (cataract surgery patient)

I didn't even think about the cost. I was just thinking about getting seen … because I really felt like something was wrong. … The cost really didn't matter at the moment because it was about my health. (MRI patient)

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When participants did think about the cost of care, they most often were concerned about identifying in-network providers. They also wanted to know in advance the copayments they would be responsible for and whether a particular service was covered by insurance. A small number of participants described how cost figured into their service decisions.

It was important to me that whoever I picked, that they were a participant with my insurance and they were going to cover the cost too. That was super important for me, the cost. Because I was out of work. There's so much you can't afford. (physical therapy patient)

When I spoke to the surgeon, we had to specifically discuss what kind of lens would be put in there because the lens that is put in there is for far sight … things far away from you. But it does not help you see close. …. If I wanted to pay for the lens that would allow me to see far away and close, which was $10,000.00, I don’t have $10,000.00 to take care of an eye. So we both agreed I would just have the regular Medicare covered price. (cataract patient)

It was actually a choice because my insurance would have covered the old-fashioned [prep medicine] but the doctor gave me a script for the more modern one, which you have to ingest a lower volume of it. So, I chose to pay for that, because I knew it wasn’t covered. … It was $90. … I was a little astonished at how much I had to pay, but after it was over I said I would do it again because it’s half the volume of what you have to drink of the other stuff. And I just find it so horrible that it’s worth it for me. (colonoscopy patient)

Participants generally sought coverage information directly from their insurance companies or the providers themselves—though they were not always confident in the answers they received and sometimes sought verification. Participants most often found coverage information by searching on the specific insurance company or provider websites, or by calling them directly. A few participants said they received cost information from people they knew, or relied on past experiences with a similar service to predict the cost of the care.

The first place I went was to my insurance providers’ website to see which MRI

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facilities are covered. Then I Googled each of their names to see if they had the information I wanted online. None of them actually did so I ended up having to call them all. (mental health services patient)

I called my insurance company. … I’m not going to go through their 2,000 pages of documentation. I’m just going to call them and risk that the 20-year-old who answers the phone knows what she’s talking about. … And actually, I called twice because I don’t trust them. (sleep study patient)

Some participants who looked up information about the cost of their care felt the information they found was too general and therefore not helpful. Most wanted to determine the exact cost of care, including any associated costs, before receiving services.

Cost of healthcare service—I don’t mind telling you that I don’t think you’re gonna find that information online, because I have looked; when I went for an MRI, I was concerned with the cost, and I tried to do a search of what the cost of an MRI is, in my area … what it said the cost was, was from $3,000 to $10,000, so I felt there was not an accurate—that I couldn’t find the correct information that I was looking for. (MRI patient)

[Patients] should have estimates on how much certain things would cost. That would be helpful. Because people then have to start thinking about their deductibles and things like that. (cataract surgery patient)

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Table 5, below, summarizes cost concerns identified by interview participants. Many felt that information on these additional costs would be important for patients to know before seeking care.

CATARACT SURGERY• Coverage differentials according to features of the lens.

SLEEP STUDY• Cost and coverage for equipment to address breathing-related sleep disorder (CPAP).

PHYSICAL THERAPY

• Prescribed number of physical therapy visits, so as to predict full out-of-pocket costs.

OBSTETRIC CARE

• Separate copays charged for various services received during a single visit, including the visit itself, bloodwork, and ultrasound.

• Variations in cost associated with the length of hospital stay, as determined by the need for a C-section or any other complications.

KNEE/HIP SURGERY

• Variability in insurance coverage for rehabilitation.

• In-network versus out-of-network status of anesthesiologist provided by the hospital (may not be covered by a patient’s insurance).

• Out-of-pocket costs for transportation from the hospital to the rehabilitation facility.

COLONOSCOPY

• Differential costs for colonoscopy preparation (laxative).

TABLE 5. SERVICE/PROCEDURE-SPECIFIC COSTS AND COST-RELATED CONSIDERATIONS DESCRIBED BY PARTICIPANTS

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PARTICIPANT RECOMMENDATIONS

Access to information

Most participants interviewed felt that information on healthcare cost and quality should be made available online. In addition to general search and ratings websites, some participants felt that that provider and facility websites would be good places to find both quality and cost information—since that information could provide more direct information about a provider or facility.

I think the internet would probably be the best place [to look for information]. So many people have access nowadays and even people who don’t, know people who do, and there are libraries available, things like that. I just feel it’s probably one of the better places it could be. (mental health services patient)

I would look on the actual site of the [provider]. On their site, because that’s gonna probably offer if they take your insurance, that they accept, and they tell you information. And, I think from there, you can search more information, do more of a Google search on different things that you want to find out about that practice. (mammogram patient)

I think that if some of the websites that detailed information about doctors, if they partnered with health insurance companies and made—maybe made direct links so that when you're looking up the doctor, "Oh, yes, this doctor is available," I can click on their name and pull up reports from this agency and this agency, saying this website—and find out information that might shorten the process. (obstetrics patient)

Many participants felt that the NYSDOH would be a good source of consumer information since it is neutral and collects data from providers and facilities. A couple of participants felt that a nonprofit organization would also be a trusted, unbiased source of information. As mentioned above, some participants felt that it would be convenient to get information from provider websites, but they also recognized that these sites are likely to be biased.

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I do believe that the state should maintain a database of complaints so that the complaints themselves have integrity. Otherwise, people will often go in, and try to change reviews, and things. … Don’t make the consumer depend on the doctor’s own website or the institution’s own website for accurate information. (sleep study patient)

You could say that each group has to do it [provide information] on their website. However, if you did that, there would be questions of trust, as how much data was manipulated. If it was a state-run thing or some sort of medical facility that ran it, I would feel more secure about it. … I'd also like where doctors can put in feedback and individuals can put in feedback, so that there's a state evaluation of it, but there's also an individual input, where somebody can say, "Yeah, I had bad experiences there," or "I had good experiences there," or "The state is all flooey. They don't know what they're doing," or "The state looks as though they've been paid off by these guys," and you get a good rating. It's more even-handed if you get different people giving different kinds of ratings. And I don't want it to be just one rating. I'd like one rating by the state and one rating by the people. (MRI patient)

To have some sort of non-profit organization or governmental body or something like provide [information], that would seem like to have the most authority. (mental health services patient)

Several participants said that their health insurance company should be a source of both cost and quality information. They recommended that health insurance websites give details on quality indicators, such as ratings and provider qualifications, in addition to cost estimates—including what will be covered, co-pays, and other out of pockets costs.

I think when you go on the insurance company’s website, they just give you like Dr. X is covered under us or even a network, Dr. Y, Dr. Z. I think everything should be laid out like what type of insurance the doctor accepts, if there are any co-pays or any out of pocket deductibles. I think everything should be spelled out. … I think it would save a lot of time. (diabetes management patient)

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[The best way to get information is] through the insurance company telling me the information about who has the best experience, who has any lawsuits because of this, who’s had complaints, who’s got good bedside manners. (colonoscopy patient)

In addition to source, participants described the content they wanted in consumer-focused websites. Most recommendations centered on providing additional information on a single site. Specifically, they recommended that websites with quality indicators also provide general information on services and procedures, categorized by geographical area. A few wanted websites to include features to facilitate comparison by quality or cost. Additionally, individual participants made the following recommendations:

I wish I'd done more research but I just didn't know how. Maybe if some of the websites that were out there had more information kind of guiding women how to best make those decisions, that could also be helpful. … Yeah, just kind of outlining what to look for or if you have this concern, you may wanna look for a doctor who specializes in this. If you have that concern—kind of help direct you. (obstetric patient)

I wish there was really a place that I could sit down, and I could inform people of what happened. Sit down and write a couple of paragraphs about the way it was handled. I don’t know if there is. WebMD and the rest of these physician’s websites give you a limited amount of space and you really can’t express yourself very well. Sometimes I almost feel like people have grudges, but if you could state your evidence now, it’s not a grudge, it’s a practical fact. … Yeah, I think that would be a good thing. (hip surgery patient)

• Provider data should be centralized, with links to reports, statistics and quality measures all located on a single webpage.

• Develop websites guiding health consumers on how to research quality indicators and how to make decisions when “shopping” for healthcare services or providers.

• Create an online platform that allows patients to share their healthcare experiences in detail, since patient reviews may be limited to generalities due to site word limits.

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Although all interview participants used the internet, they recognized the needs of those without internet access or with limited computer literacy to obtain information about quality. For such individuals, they recommended placing pamphlets with quality and cost information in government and social service agencies’ offices, and in doctors’ offices. They felt that older adults were more likely to have difficulty accessing websites, so senior centers and other organizations serving—or frequented by—older adults should have access to patient advocates as well as hard copy materials with provider information.

A lot of people don’t use the internet. I would pick a combination of paper media at doctors’ offices … because there’s likely to be a lot of foot traffic of people that are there who have concerns that they need to address or have time to kill, and there’s something they can read that could actually help them choose their care. (dental patient)

AARP has a lot of influence with older people, although that’s national…the local Office for Aging in our area gives information, has a newsletter monthly. If someone really wanted to press and get their name out there, they can put an advertisement in the local Office for Aging, which goes out to seniors in the area and churches. (cataract surgery patient)

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CONCLUSIONSFindings from these interviews, which focused on the use of particular healthcare services and procedures, are consistent with findings from our previous study and other available research. Specifically, consumers who search for data on provider quality most often rely on patient reviews and provider characteristics; quantitative indicators remain underutilized and unavailable to consumers. Although our sample was limited to individuals who reported using the internet to search for healthcare information, findings confirm the value of online sources. Participants generally used Google or Yelp, as well as more specialized commercial sites. Participants struggled to recall the names of the more specialized sites, possibly suggesting that one site was not perceived as better than another.

Although the internet was widely used by participants to search for provider information, it is notable that many searches began with recommendations or referrals from people they knew or the providers they were already seeing. In these cases, internet research served to gather additional information on already identified providers and sites, rather than using the internet as a starting point.

In contrast to our prior research, this study asked participants to focus on their experiences with a single healthcare issue and provide in-depth information related to the quality indicators that they associated with a set of related services and procedures. This approach provided an understanding of not only how participants anticipate the quality of care they will receive from a potential provider, but also how participants assessed the quality of care they have already received. This retrospective view is particularly valuable given that participants reported drawing heavily on deficiencies identified in past visits to focus their search for quality information about providers they might seek care from in the future. Documenting quality indicators from past experiences could facilitate the development of measures that may resonate with consumers looking for data to inform their decision-making.

Each service and procedure targeted in these interviews elicited a unique list of quality indicators from participants. This suggests that consumers are looking for something other than uniform indicators to predict quality across a range of services. Comprehensive data, including indicators relevant to a specific service, will be necessary for consumers to effectively use quality information to make informed decisions about their healthcare.

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Findings related to cost were largely consistent with our earlier work: participants with insurance generally did not consider cost in their assessments. To the extent that they considered cost, they were mainly interested in whether a provider was in their insurance network. Findings from these interviews also echoed our previous research concerning where patients seek information about cost—from their insurance companies and providers themselves. Novel findings relating to cost centered on the service-specific costs and cost-related considerations that patients identified from their personal experiences. The service-specific nature of these data can inform the development of resources for patients that more fully elucidate the cost of their care.

Finally, participants provided recommendations regarding how and by whom cost and quality information can be provided to patients seeking healthcare services. Recommendations centered on the provision of information by a neutral source (such as the NYSDOH) and making a variety of information easily available to patients through the internet. Participant interest in receiving information from a neutral source may indicate that the NYSDOH can play an important role in providing transparency in offering healthcare information to consumers and, additionally, that the current plan to create a platform to aggregate information from across different resources will be well received. This research has several limitations. Specifically, participants were recruited using the internet, and eligibility criteria included self-reported use of publicly available data. Participants therefore are not likely to be representative of all New York healthcare consumers, particularly with respect to internet use for obtaining healthcare information. Additionally, participants were told that the interviews were being carried out on behalf of the NYSDOH. Participants’ perception regarding the NYSDOH and its neutrality may have been influenced by this knowledge.

Despite these limitations, we feel the findings can be applied to the development of a consumer-focused healthcare website and/or resources. The sample is consistent with the NYSDOH’s target population of internet users. Although the findings are similar to those reported in related work, the focus on specific services and individual assessments of quality and cost information about those services provides useful detail regarding what information is of interest to consumers. In addition, findings

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showing that consumer research on quality and cost generally follow, rather than precede, a specific provider recommendation or an unsatisfactory prior experience, suggests the need for approaches to navigation and marketing that may not have been considered previously.

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ACKNOWLEDGEMENTS

We would like to thank Natalie Helbig at the New York State Department of Health for the opportunity to carry out this research and for her continued enthusiasm for this work; and Anthony Shih, MD whose background and expertise was an invaluable resource in carrying out this project.

The New York State Department of Health provided funding for this report through Funding Opportunity Number PR-PPR-14-0055-01-00 from the U.S. Department of Health and Human Services (HHS), Centers for Medicare & Medicaid Services. The contents provided are solely the responsibility of the authors and do not necessarily represent the official views of HHS or any of its agencies or the opinions, interpretations or policy of the State.

The views presented in this publication are those of the authors and not necessarily those of The New York Academy of Medicine, or its Trustees, Officers or Staff.

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APPENDIX 1: Interview Topic Guide

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Consumer Interviews on Healthcare Information and Decision Making Interview Topic Guide

To start, I’d like to ask you about the [x service/procedure] you received.

1. Can you begin by telling me when you received [x service/procedure] and why?

2. How satisfied were you with the care you got? a. What did you like about the quality of the care you got? Why? b. What did you dislike about the quality of the care you got? Why?

3. How did you feel about the cost? a. Were there significant out of pocket costs? Did you expect that?

Now I’d like to ask you about the information you used to choose your provider.

4. How did you choose which provider to go to for [x service/procedure]? a. Generally, what kind of information did you look for before you chose?

5. To what degree did you consider quality? Why?

6. Can you describe to me how you looked for information about the quality of providers before receiving [x service/procedure]? In this question, we’re really focusing on sources of information about quality. a. Where did you look for information? Why did you choose these [sites places]? b. How easy or hard was it to find the information you were looking for? c. [If used consumer website/s] How did you find out about those websites?

7. Specifically, what kind of information about quality did you look for before you chose a provider for [x service/procedure]? a. For [x service/procedure], how do you think about quality—what matters most? Can you explain? b. [If applicable] What terms did you put into Google or any other website you

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used to find quality information?

c. We’re interested in learning how people think about a provider versus the place he or she works. When looking for information on quality, which did you focus on? d. How did you decide what kind of information on quality to look for?

8. [If not addressed above] Did you look for any specific data related to quality before choosing your provider—these are things that are often quantified, like infection rates, rate of readmissions, cesarean section rates, etc.? a. [If yes] what specific data did you look for? Why? b. What about data related to accepted standards for quality of care—like appropriate protocol for dispensing pain medication or antibiotics? c. [If yes] How/where did you find that information? i. Were there any specific websites you used? d. Was the information you found easy enough to interpret? Did the sites provide explanations? Were they useful? e. [If no] why didn’t you look for that kind of information?

9. [If appropriate based on response to above] How did you know what kind of quality-related data to look for?

10. Overall, how useful was the information about quality you found when making your decision about where to receive care? Why? a. How well would you say the information you found reflected the quality of your experience?

Changing topics a little here. ...

11. To what degree did you consider cost when choosing a provider? Why?

12. Did you look for information, or ask about, the cost of services before seeking treatment? a. What specific information did you look for?

13. Where did you look for/find information about cost? Was it different from

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where you looked for information about quality? a. [If used consumer website/s different from those used for quality] How did you know about those websites? b. How easy or hard was it to find the information you were looking for? c. Did you feel comfortable (or confident) interpreting the information? For example, what you would pay out of pocket, what your insurance would be billed? a. Are you concerned with the total costs—or just your own costs? (If concerned with total costs, please explain.) d. How well would you say the information you found reflected the true cost of your encounter? e. [If needed] Why didn’t you look for cost information?

14. Was there any information you tried to get but couldn’t? a. What information was that? b. Why do you think you couldn’t get it?

The next few questions focus on your recommendations for how to provide quality and cost information to people who need to make a decision about [x service/procedure]

15. Using your own experience as a reference point, what kind of information about the quality of a [x service/procedure] provider do you think would be most useful for someone who is deciding where to go for care? Why? a. Thinking specifically about quality data that might be available about providers, like infection rates, patient outcomes, etc., which I mentioned/ we discussed earlier—how do you think a website, or organization that provides this information, could help people to interpret or understand that data?

16. What is the best way to make that information available to people who have to choose where to get care? Why? [Probe if necessary: via the internet? Certain organizations? Insurance companies? From doctors themselves?] a. Where do you think people will be most likely to look for this information?

17. Some websites provide information about the quality of a healthcare provider and include things like provider credentials and specialization, hospital affiliation, and management of particular conditions. How useful do you think it

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is to know this kind of thing about [x service/procedure] provider before you go? Why?

18. Other information provided by websites might include [A, B, C, D—use relevant sample list from Shoppable services report as well as overall quality indicators, like 30-day readmission rates]. How useful is it/would it be to know this information about a [x service/procedure] provider and/or setting before you go? Why? a. How much would/did a poor rating in these areas affect your choice about which [x service/procedure] provider to go to?

19. What kind of cost and/or insurance information should be included in websites that provide information to patients? Why?

Finally, we have some general questions about other information you’ve used in your healthcare decision making.

20. We’ve talked a lot about information you might use to choose an [x service/ procedure] provider. Has any of that (or other) information been useful in the context of a visit? For example, helping you to assess quality of care during the visit or prompting you to ask certain questions or make specific requests?

21. Have you ever looked for information on cost and/or quality of other healthcare services—or goods (e.g., prescriptions, MRIs, CT Scans, mammograms, etc.) before getting them? a. What information did you find? b. Where did you find the information? c. What information was most useful? Why? d. Was there any information you found that wasn’t useful at all? Why not?

That was my last question.

22. Before we close, is there anything else about this topic that we didn’t ask but should have? Is there anything else you’d like to share?

Thank you!

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APPENDIX 2: Demographic Questionnaire

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Consumer Interviews on Healthcare Information and Decision Making

Before we begin the interview, I have a few brief closed-ended questions to ask you.

1. Can you confirm your gender? _______________________

2. What is your race or ethnicity? (Check all that apply) American Indian or Alaskan Native Hispanic/Latino Asian, specify: _______________ White Black or African American Other, specify: Native Hawaiian or other Pacific Islander Prefer not to answer

3. What is the main language you speak at home?________________________

4. How far did you go in school? (Check only one) Less than high school graduate High school graduate or GED Vocational or technical school graduate Some college but no degree College degree or higher Prefer not to answer

5. Are you currently working? (Interviewer: clarify which is their primary situation —for example, if they are a student and work part time) No, I do not work No, I am retired No, I am a student Yes, I work full time Yes, I work part time

6. How much is your annual health insurance deductible? By deductible, we mean the amount of money you are responsible to pay out-of-pocket before your insurance company begins to cover the cost of your healthcare. $____________________ Don’t know

Study ID: ____________ Date: ________________

______

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7. Please tell me how concerned you are right now about each of the following financial matters, based on your current financial situation—are you very worried, moderately worried, not too worried or not worried at all?

Very worried

Not being able to pay medical costs of a serious illness/accidentNot being able to pay medical costs for normal healthcareNot being able to maintain the standard of living you enjoy

Moderately worried

Not too worried

Not worried at all

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