Do Patient Preferences for Health Information Vary by Health Literacy or Numeracy? A Qualitative Assessment

Abstract

Seeking health information can be a complicated process for a patient. Patients must know the topic of interest, where to look or ask, how to assess and comprehend, and how to evaluate the credibility and trustworthiness of the sources. In this study, the authors describe preferences of patients with multiple risk factors for cardiovascular disease with varying health literacy and numeracy abilities for receiving health information. Participants were recruited from 2 health care systems. Health literacy and numeracy were assessed and participants completed an orally administered survey consisting of open-ended questions about obtaining health information and preferences for health information. In-depth interviews were conducted with a subset of participants. A diverse sample of 150 individuals (11.3% Latino, 37.3% African American, 44.7% with income less than $15,000/year) participated. Most participants had adequate functional health literacy, while 65% had low numeracy skills. Regardless of health literacy or numeracy ability, participants overwhelmingly preferred to receive health information during a face-to-face conversation with their health care provider. While individuals with adequate functional health literacy identified a variety of health information sources, actions are needed to ensure multiple modalities are available and are in plain, clear language that reinforces patients' understanding and application of information to health behavior.

Treatment decision making in health has changed markedly over the last several decades. At first, there was an uneven decision-making relation (hierarchical) between provider and patient in the health care system. As the emphasis of care has changed from acute to chronic care, patient involvement and autonomy in the care process has also evolved and increased. Models that have emerged from this evolution include the informed decision-making model, the shared decision-making model, and the patient-centered care model (Committee on Quality of Health Care in America & Institute of Medicine, 2001).

The first step in shared decision-making and patient-centered care is for patients to be adequately informed about their condition and their care options. Current health education approaches seem to imply that the more information a patient has, the better he or she is able to manage his or her illness, evaluate options, and participate in the decision process (i.e., self-management of a chronic illness). The advent of the Internet eliminated many barriers to accessing information, including health information. Now, patients can search the web to find a significant amount of information on any given topic. So, one could argue that the possibility to obtain accurate medical information about their diseases and possible treatments gives patients new opportunities for greater participation in the decision-making process, making them more active agents in their care. But does increased Internet access and agency over seeking and obtaining information translate to understanding, knowledge, and application?

Health literacy, the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Nielsen-Bohlman et al., 2011), is of substantive importance in health promotion and chronic disease self-management and is an important mediator of health outcomes (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011). Persons with high health literacy are better able to prevent and manage disease relative to persons with limited health literacy (Berkman et al., 2011). Health numeracy, a subset of overall health literacy, is defined as the degree to which individuals have the capacity to assess, process, interpret, communicate, and act on numerical quantitative, graphical, biostatistical, and probabilistic health information needed to make effective health decisions (Golbeck, Ahlers-Schmidt, Paschal, & Dismuke, 2005). Several health-related tasks, such as understanding risk/benefit information, understanding food labels, management of weight, portion-size estimations, or interpreting blood sugar and/or blood pressure levels, essential for prevention and management of conditions related to cardiovascular disease such as obesity, hypertension, and diabetes, depend heavily on numeracy (Cavanaugh et al., 2008; Huizinga, Beech, Cavanaugh, Elasy, & Rothman, 2008). Patients who are required to self-manage an illness and who have poor numeracy abilities are at risk for having poorer health outcomes.

The number of health information sources is large and continually growing. The desire for information varies by patient and by circumstance. Demographic variables such as education level and race have been shown to influence information seeking (Rooks, Wiltshire, Elder, Belue, & Gary, 2012), as has health literacy (Shieh, Broome, & Stump, 2010). Patients with inadequate functional health literacy have worse comprehension of physician instructions and tend to ask fewer questions in the medical encounter (Sudore et al., 2009). Many studies have shown that the medical information currently available and routinely given to patients is often at advanced reading levels (Cotugna, Vickery, & Carpenter-Haefele, 2005; Kirksey, Harper, Thompson, & Pringle, 2004). Given the importance of patient self-management of health and illness and the expectation to participate in decision making, patients are constantly forced to make complex decisions on multiple levels. Having sufficient and comprehensible information is necessary for patients to make health-related choices that best suit their needs and conditions. Information that is not designed for low health literacy/numeracy users can potentially exacerbate health disparities (Bennett, Chen, Soroui, & White, 2009). The purposes of this article are (a) to describe where a diverse sample of primary care patients who are at risk for cardiovascular disease and have varying health literacy and health numeracy abilities obtain their health information and (b) to describe their preferences for methods of receiving health information using a qualitative approach.

Method

Participants consisted of individuals who received care at either Kaiser Permanente Colorado (KPCO), a large integrated health care system, or Denver Health and Hospital Authority (DHHA), a federally qualified community health center serving low-income patients. Eligibility criteria for KPCO and DHHA were age 40 years and older and having at least two of the following: diabetes mellitus, hypertension, hypercholesterolemia, smoking, and body mass index >30, and had completed a primary care clinic visit in the past 12 months. All study participants needed to be able to read and understand English. Potential participants from KPCO were identified through the health care organization's electronic medical record. A recruitment letter with an opt-out postcard describing the study was mailed to a randomly selected sample of individuals. Study staff called individuals who did not return the postcard after 10 days to tell them more about the study, reassess eligibility criteria, and schedule a study appointment if interested. DHHA did not approve the mail out with the opt-out approach. DHHA participants were recruited using a two-tiered approach, which consisted of either a recruitment letter with an opt-in approach mailed to all potential participants at one Denver family health center followed by in-clinic recruitment at the center. For all refusals an attempt was made to collect information on age, gender, education, and main reason for not wanting to participate.

The main study consisted of a one-time meeting with the study investigator that included the completion a health literacy assessment, numeracy assessment, and a verbally administered survey. Questions included demographics as well as open-ended questions that explored sources for health information used by study participants, how much they trusted these sources of information and why, how well they understand the information, what kinds of health information would they like to have, which sources they used the most, and what their most (and least) preferred ways were to receive health information and why. Not all of these constructs are discussed in this article. Participants were then asked to complete the Short Test of Functional Health Literacy in Adults (Baker, Williams, Parker, Gazmararian, & Nurss, 1999), which was timed by study staff, and three health numeracy items (Schwartz, Woloshin, & Welch, 2005) on their own and then place the assessments in an envelope. This approach was used so as not to bias the investigator during the data collection process. Written informed consent was obtained from all participants, who received a $20 gift card to a local grocery store for completing the surveys. Individuals needing assistance with transportation were also given bus tokens for travel to and from the study appointment.

In-depth interviews were conducted with a subset of the study sample at each health care organization. All individuals who completed the main study visit were asked at the conclusion of the visit if they were interested in participating in a follow-up interview. The interviews were conducted during a separate study visit approximately 2 weeks following the main study visit. Participants received an additional gift card from a local grocery store ($20) as incentive for participation in the in-depth interviews to cover additional travel expenses and time.

All interviews were conducted by the study investigator and were audio taped. Interview topics included participant's knowledge, attitudes, beliefs, and experiences related to receiving and understanding health information, preferred modalities for health communication, experiences with accessing health information, and benefits and barriers to various modalities. Using open-ended questions and follow-up interviews allowed for exploring behaviors, attitudes, and beliefs that would not be discovered in a structured survey. The protocol for this study was approved by the KPCO Institutional Review Board and the Colorado Multiple Institutional Review Board—COMIRB. The research was conducted between December 2007 to December 2008 and analyses were conducted between January 2009 and August 2009.

Analyses

All open-ended question responses and all in-depth interviews were transcribed verbatim. The narrative data was entered into ATLAS.ti and coded according to the constant comparative method (Patton, 2002). Data analyses included identifying emerging themes, interpretations, and categories about participant's experiences with and preferences for receiving and using health information. Data analysis occurred throughout the data collection and analysis phases of the study (Patton, 2002). The content of the qualitative data was coded for recurrent themes independently by the study investigator as well as a master's-level research assistant. The emerging themes were discussed between the two coders which led to the development of a thematic framework and coding structure. Recruitment for the interviews continued until saturation of themes emerged in the analyses.

Results

Characteristics of Participants and Nonparticipants

At KPCO, out of 493 letters mailed, we were able to contact 210 people to determine eligibility. Seventy-eight potentially eligible patients returned the postcard declining contact (it is unknown whether these persons would have been eligible).Despite repeated call attempts, the researchers were unable to contact 155 people. Figure 1 (left side) illustrates the recruitment results for this health care organization. Of the 210 patients contacted, 13.3% were ineligible based on study criteria. Of the remaining 182 eligible, 39.5% agreed and participated in the study. Comparing participants to those who refused the study, there were no differences observed on gender or mean age. The main reasons for nonparticipation were lack of interest in the study or lack of time (“too busy”).

Figure 1 CONSORT diagrams—KPCO compared to DHHA recruitment. *Ineligible because 3 were deceased, 3 did not speak/understand English, 6 did not have two or more cardiovascular disease risk factors, 6 lived out of the area, 1 had impaired mental capacity, 2 had impaired vision, and 7 were no longer KPCO members. **Ineligible because 9 were younger than 40 years of age, 4 did not have two or more cardiovascular disease risk factors, and 1 had impaired mental capacity. DHHA = Denver Health and Hospital Authority; KPCO = Kaiser Permanente Colorado.

Figure 1 (right side) illustrates the combined recruitment results for both recruitment methods used at DHHA. Of the 173 opt-in letters mailed, 14 expressed interest in the study. Of these, 6 (42.9%), or 3.5% of the original 173, were eligible and enrolled in the study. One hundred thirty-five individuals did not respond. The in-clinic recruitment process had 80 people express interest and 69 met eligibility criteria and were enrolled for an 86.3% participation rate. Because of difficulties tracking the total number eligible individuals in the clinic, we do not know how many individuals were approached about the study (denominator) to calculate the participation rate of this recruitment effort in a manner comparable to the other two methods (Glasgow, Vogt, & Boles, 1999). Combining both recruitment methods at DHHA, 79.8% of individuals who contacted study staff were eligible to be enrolled in the study. Across both methods used at DHHA, participants and nonparticipants (those who refused) did not differ in terms of their gender, but a difference was observed with age; participants had a mean age of 53.6 years, whereas nonparticipants' mean age was 60.4 years (p < .01). The main reason given for nonparticipation was lack of time.

In total, 150 individuals were recruited for this study and completed the main study visit. Approximately 60% of the total sample was female (see Table 1). The mean age for the sample was 57.8 years. The majority of individuals in the sample had a high school education or greater, but 13% of the sample reported less than a high school education. Eleven percent identified as Hispanic/Latino and a little less than 40% identified as African American. The majority of the participants had adequate functional health literacy (see Table 2). KPCO participants had higher rates of adequate health literacy compared with the DHHA participants (p = .001). In contrast, on numeracy scores, 64.4% of participants could only answer one or none of the questions correctly. The mean number of questions answered correctly was 1.15 (SD = 1.09) out of 3. While KPCO participants had more individuals score with low numeracy than health literacy, there were still significant differences between health care organizations (p = .001).

Table 1. Demographic characteristics of study participants by health care organization

Characteristic	Total sample (N = 150),	KPCO (n = 75),	DHHA (n = 75),
Gender (n, %)
Female	88 (58.7)	47 (62.7)	41 (54.7)
Male	62 (41.3)	28 (37.3)	34 (45.3)
Age (yrs., M, SD)	57.8 (11.5)	61.9 (11.3)	53.6 (10.3)
Latino (n, %)	17 (11.3)	6 (8.3)	11 (14.9)
Race (n, %)
White	72 (48.0)	59 (80.8)	13 (17.6)
African American	56 (37.3)	5 (6.8)	51 (68.9)
Other	19 (2.5)	9 (12.3)	10 (13.5)
Marital status (n, %)
Married	60 (40.0)	44 (58.7)	16 (21.3)
Divorced	35 (23.3)	13 (17.3)	22 (29.3)
Widowed	17 (11.3)	13 (17.3)	4 (5.3)
Never married	38 (25.3)	5 (6.7)	33 (44.0)
Education (n, %)
Less than high school	19 (12.7)	3 (4.1)	16 (21.3)
High school diploma or GED	43 (28.7)	12 (16.2)	31 (41.3)
College 1 to 3 years	51 (34.0)	27 (36.5)	24 (32.0)
College graduate	24 (16.0)	20 (27.0)	4 (5.3)
Postgraduate	12 (8.0)	12 (16.2)	—
Employment status (n, %)
Employed	48 (32.0)	32 (42.7)	16 (21.3)
Not employed	13 (8.7)	—	13 (17.3)
Retired	49 (32.7)	38 (50.7)	11 (14.7)
Unable to work	40 (26.7)	5 (6.7)	35 (46.7)
Income level (n, %)
Less than $15,000	67 (44.7)	9 (13.4)	58 (84.1)
Less than $25,000	13 (8.7)	5 (7.5)	8 (11.6)
$25,000–$50,000	20 (13.3)	17 (25.4)	3 (4.3)
Greater than $50,000	36 (24.0)	36 (53.7)	—

Table 2. Health literacy and numeracy abilities of study participants

Characteristic	Total sample (N = 150), n (%)	KPCO (n = 75), n (%)	DHHA (n = 75), n (%)
Health literacy
Inadequate	21 (14.1)	3 (4.1)	18 (24.0)
Adequate	128 (85.9)	71 (95.9)	57 (76.0)
Numeracy—number answered correctly
0–1 questions	96 (64.4)	34 (45.9)	62 (82.7)
2–3 questions	53 (35.6)	40 (54.1)	13 (17.3)

Twenty-eight individuals participated in the in-depth interviews and were 56 years of age or younger (64.3%), female (50.0%), had adequate functional health literacy (92.8%), and had lower numeracy abilities (71.4%).

Open-Ended Questions From Survey and Patient in-Depth Interviews

The responses from the opened-end questions of the survey were combined with the themes identified in the in-depth interviews to describe the patients' lived experience of obtaining, processing, and understanding health information.

Obtaining Health Information

Three core themes emerged from the data regarding the patients' experience to attaining health information: (a) access to information, (b) preferences for modality of information, and (c) reason for seeking health information. Individuals were initially asked, “Where do you get information about health for yourself and/or family members?” Responses varied by health literacy and numeracy abilities. Individuals with inadequate functional health literacy and/or low numeracy named either their personal doctor or the clinic in which they receive their primary care as their main source for health information (see Table 3). The majority stated they did not have access to the Internet, thus the need to rely on their health care providers for information. In addition, they occasionally would reach out to their interpersonal circle and talk with friends, family, and church members. If they had questions they want answered they tended to wait until an appointment to speak with their doctor. If a question was more pressing, they would call the nurse line. Those with adequate functional health literacy and/or high numeracy stated they used and had access to a plethora of sources for health information ranging from their doctor to the Internet to several types of printed materials and health organizational newsletters.

Table 3. Summary of study participants' most frequent qualitative data responses by health literacy and numeracy abilities

Question	Inadequate functional health literacy (n = 21)	Adequate functional health literacy (n = 128)	Low numeracy (n = 96)	High numeracy (n = 53)
Where do you get information about health for yourself and/or your family?	• Doctor ^a • Health care system ^a (either in person or calling the nurse line)	• Doctor ^a • Handouts/pamphlets• Internet ^a • Books/magazines• Newsletters	• Doctor ^a • Friends• Family• Church	• Internet ^a • Doctor ^a • Books/magazines• Handouts/newsletters• Family• Friends
What is your most preferred way to receive health information?	Face-to-face with a health care provider	Face-to-face with a health care providerTailored summary handout
What is your least preferred way to received health information?	• Written ^b • Internet ^b (because it is written but also because of limited access)	• Mail ^b • Internet ^b • Telephone• Non–health professionals	• Internet ^b • Mail ^b • Telephone	• Mail ^b • Internet ^b • Telephone• Non–health professionals

Individuals were asked for their preferred way to receive health information. An overwhelming number of individuals of all literacy and numeracy levels responded that their most preferred way to receive health information was face-to-face from a health care provider. The health care provider could be a variety of health professionals, such as a doctor, nurse, or pharmacist. The unanimous reason for wanting to receive information face-to-face was so that they could ask questions if they did not understand the information. In addition to the face-to-face interactions, participants stated they wanted a summary handout to take with them after their visit to serve as a reminder of what was discussed.

The majority of individuals also commented on current health education materials in terms of handouts, pamphlets, and booklets. Several individuals commented that they would like to see more options in terms of handouts and information materials available in the clinics. One participant commented,

Why do they not have a wall of brochures here like most hospitals and clinics? I don't like to ask for information because sometimes I don't know what I want or need. But if I saw a variety of brochures on different health topics, it might spark my interest and I would take one and read it.

While participants felt that the general information about health and health conditions was good, they all said they were tired of generic information. They wanted information tailored and made specific to their individual health conditions and situations. One participant remarked,

While it is nice to have all this information, I want someone to apply it to me. I know I have to exercise and eat right, but I need help figuring out how to do that when I work 10 hour days at a job that is not very flexible and then still have my family to take care of.

Another respondent stated,

While I appreciate the generic information I am able to get, I really would like something more specific to me.…You would think they could incorporate some of my information into the information they send me like, we know you have diabetes and you are due for having your feet checked. Or the last time you were in your blood sugar was a bit high, here are some things you could do to help work on lower your numbers. Also, not everyone is the same, so how can you tell everyone the same thing?

Participants were also asked about their least preferred way to receive health information. Individuals with inadequate functional health literacy tended to respond that their least preferred method was written since they do not read well or over the Internet (because of lack of access and requiring reading). Individuals with adequate functional health literacy were more likely to respond stating they did not want to receive information by mail or the Internet. In regards to mail, they felt they would confuse it with junk mail and would discard the information before reading. The Internet, while a preferred source for health information to become quickly educated on a health topic, was also the least preferred method for this group because often it does not provide the opportunity to allow for questions, clarification or confirmation of information found.

When my husband was diagnosed with diabetes, we waded through all the information, newspaper articles, Internet sites, and even friends and family. We did a lot of research then we went in to his doctor to ask our questions and to get clarification on a few things.

… While I like using the Internet, I would still say our doctors are our primary source of information.

When I need information I talk to people. When I come to the clinic I ask a lot of questions. If I don't get the right feedback that I want, then I go to the next person to ask … . Most of the time I just end up talking to my doctor.

These individuals also stated they did not want to receive health information from nonmedical professionals. They felt individuals who were not medically trained would give out wrong or incorrect information and would not be able to adequately answer their questions, thus leading into a long exchange of the following:

… I will tell the doctor your concern or question and call you back with a response. Then if you are not able to answer the phone, they leave a message, and then you have to call back. It could be days before you finally get an answer to your question.

Participants usually reported a personal or family health concern as their primary impetus for seeking information. From time-to-time, they desired information for general knowledge.

Processing Health Information

An overwhelming majority of respondents trusted the information they received from their health care organization and from their physicians. Individuals with adequate functional health literacy and high numeracy were not completely trusting of all the additional sources they used for health information (not including physician and health care organization). Usefulness greatly depended on whether or not the patient could understand information given to them.

I get my information from my doctor but sometimes he can't explain things to me in plain English or even in terms I know. Sometimes I ask him to re-explain it to me and he doesn't have time. I then end up going to find someone else to try to explain it to me to where I can understand. Why talk to me for ten minutes if you are going to use a bunch of terms I don't understand? What am I suppose to do with this when I am done? I can't do anything because I don't understand.

Understanding Health Information

While individuals with limited health numeracy trusted the information they received from their physician and reported they understood it, when asked to give an example of how they took the information they were given and applied it, no one could give an example. They also had difficulty explaining basic knowledge regarding some of their current health conditions; let alone how to use the information given to manage it. Individuals with adequate functional health literacy and high numeracy were able to give examples of application and even provided unsolicited examples of following up if more information was needed.

Discussion

Individuals with inadequate functional health literacy and low numeracy in this study predominately rely on their physicians and health care organization for health information. Individuals with adequate functional health literacy and higher numeracy skills use a variety of sources; the Internet and their physicians being the most used. Also, the findings from this study suggest that while there are several options for receiving health information, the most preferred way, regardless of health literacy and numeracy ability, is for a patient to receive the information face-to-face from a health care provider. The least preferred way for receiving health information is in written form (print or Internet) by those with inadequate functional health literacy and by mail or Internet by those with adequate functional health literacy.

Results from this study replicate some of the results of a study conducted by Shaw et al in the United Kingdom (Shaw, Ibrahim, Reid, Ussher, & Rowlands, 2009). Participants of varying health literacy levels in Britain were questioned on their experiences with health information leaflets (pamphlets) and interacting with their physician to obtain health information. Results showed they were interested in reading the leaflets but they preferred to receive the information directly from their physician. Information seeking results from our study are also consistent with findings from the health literacy results from the 2003 National Assessment of Adult Literacy survey. In this nationally representative sample, a lower percentage of adults with below basic health literacy reported they used written sources or the Internet for health information (Kutner, Greenberg, Jim, & Paulsen, 2006).

The majority of study participants stated they preferred to receive their health information from their physician. While it has been suggested that physicians overestimate the health literacy abilities of their patients (Kelly & Haidet, 2007), physicians need to ensure they use communication styles that make no assumption about whether an individual can understand. Communication during the patient–physician encounter should include the use of plain language (no jargon) and be specific, use multiple forms of communication, help patients to ask questions, and assess comprehension of information to make certain that all patients understand the information they have been given (Oates & Paasche-Orlow, 2009). All of our study participants had multiple risk factors for cardiovascular disease which usually requires changes to be made in terms of lifestyle choices, diet, exercise, as well as one or more medications; thus, making the need for clear and easy to understand health information such as risks for this group even greater.

In-depth interviews were conducted until saturation of themes emerged. The results from the thematic analysis combined with the open-ended survey responses, proved to be valuable in understanding the participants' lived experience of obtaining, processing and understanding health information. Individuals with inadequate functional health literacy and low numeracy have different experiences from individuals with adequate functional health literacy and high numeracy. Differences were observed when individuals realized they needed health information, where they looked for health information, how much they trusted the information, and whether or not they could apply the information to their personal situation. Individuals with limited experiences and opportunities with health information could potentially have different health outcomes from those that have greater experiences and opportunities to find, use, and apply health information. Consequently, multiple mechanisms for providing health information should be available not only to meet patient preferences but to also accommodate the various health literacy and numeracy abilities. While patients overwhelmingly prefer to receive health information from their health care providers, having multiple modalities available in plain, clear language is key to patients understanding and application to the maintenance of their health.

This study has several limitations. The sample size was relatively small, especially for the in-depth interviews, and representativeness is unknown given little information was available for those who chose not to participate in this study. The results might not translate to other populations. In addition, there were a small number of individuals with inadequate health literacy. This study is also restricted to perceptions of what patients thought they would like and did not evaluate the actual usefulness or reach of different modalities. However, given that findings from this study have similar results to other published work, we feel the results give a valuable insight into the study participants who are at risk for a chronic health condition and their preferences for how to receive health information. Strengths of the study include the diverse sample, the use of two distinct health care systems, the separate analyses of literacy and numeracy issues, and the use of qualitative data collection methods.

Although this was not the first study to look at health information preferences for patients, this is the first to our knowledge to examine this topic in connection to health literacy and numeracy abilities, as well as using a qualitative approach. The main message from this study is regardless of health literacy or numeracy ability, patients prefer to receive health information from their health care providers. Patients want face-to-face time with their physician or health care providers so that they may receive the health information that they want, while at the same time to have the opportunity to ask questions to better understand and apply the information given. Although patients overwhelmingly prefer to receive health information from their health care providers, having multiple modalities available in plain, clear language is key to patients understanding and application to the maintenance of their health.

Acknowledgments

This work was supported by Kaiser Permanente Colorado's Institute for Health Research, The University of Colorado Health Outcomes Department, and The Health and Behavioral Sciences Department at the University of Colorado Denver.

The opinions expressed in this article do not necessarily represent those of the National Cancer Institute.

Notes

Note. DHHA = Denver Health and Hospital Authority; KPCO = Kaiser Permanente Colorado.

Note. None of the study participants had a score of marginal functional health literacy. DHHA = Denver Health and Hospital Authority; KPCO = Kaiser Permanente Colorado.

^a Primary sources for health information.

^b Least preferred source for health information.