Abstract
Objective
Effective health communication is critical for understanding and acting on health information. This cross-sectional study explored participants’ understanding of their health condition, their preferences for receiving health communications, and their interest in receiving clinical trial results across several therapeutic areas.
Methods
The study recruited participants via social media, email newsletters, and advocacy organizations. An online screener captured demographic information (health conditions, age, race/ethnicity, gender, and education). Eligible participants were emailed an online survey assessing preferred sources and formats for receiving health information, interest in learning about topics related to the results of clinical trials, and health literacy levels.
Results
In total, 449 participants (median age, 35 years [range, 18–76]; White, 53%; higher education, 65%; mean (range) health literacy score, 1.9 [0.4–3.0]) from 45 US states completed the survey representing 12 disease indications (bipolar, blood and solid tumor cancers, irritable bowel syndrome, inflammatory bowel disease, major depressive disorder, migraine, Parkinson’s, psoriasis/atopic dermatitis, retinal vein occlusion/macular degeneration, rheumatoid arthritis, and spasticity). Healthcare providers were the preferred source of health information (59%), followed by Internet searches (11%). Least preferred sources were social media (5%), friends/family (3%), and email newsletters (2%). Participants preferred multiple formats and ranked reading materials online as most preferred (33%), along with videos (28%) and infographics (27%). Printed materials (14%) and audio podcasts (9%) were the least preferred formats. A majority of the participants reported that the health information they found was hard to understand (57%) and confusing (62%). Most participants (85%) were somewhat/very interested in learning about clinical trial results, with the highest interest in short summaries of safety (78%) and efficacy (74%) results.
Conclusion
Effective health communication may be achieved via multiple formats shared directly by healthcare providers.
PLAIN LANGUAGE SUMMARY
Researchers wanted to learn how people preferred to receive health-related communications, including information about the results of clinical trials. They surveyed 449 people from 45 US states with 12 different health conditions. The survey questions asked people about their preferred sources and ways of getting health information. It also asked about their interest in learning about clinical trials related to their health condition. The results showed that most people preferred to get health information from their healthcare providers (59%). The Internet was the second most popular choice (11%) for getting health information. People did not like getting health information from social media, friends or family, or email newsletters as much. When it came to how health information was shared, people liked reading materials online (33%), watching videos (28%), and looking at infographics (27%). They did not like printed materials and audio podcasts as much. Most people (85%) were interested in learning about the results of clinical trials in short summaries. They wanted to know about the safety (78%) and how well the treatments worked (74%) in the short summaries. In conclusion, people liked getting health information from healthcare providers like doctors, nurses, and others in different formats. Sharing information in different formats through healthcare providers may improve communication for patients with different health conditions.
Introduction
Effective health communication is critical to healthcare, enabling patients and caregivers to understand health information of interest and assisting in decision-makingCitation1,Citation2. It is the cornerstone of patient education, empowerment, and engagement and is pivotal in improving health outcomes and patient satisfactionCitation3. Various factors can impact the effectiveness of health communication including accessibility and the format in which it is presented. In addition, the format of communication used in preparing health materials may also impact the effectiveness of health information. Lay/plain language summaries have been shown to enhance communication between patients and their healthcare providers, aid in understanding health and healthcare information, and assist with retaining important health informationCitation4.
The digital age has revolutionized the dissemination and accessibility of information, providing numerous sources to find and access health information and various formats to suit people’s preferences. A report by the Pew Research Center has shown that 74% of all US adults use the Internet, and 61% have looked for health or medical information on the InternetCitation5. However, information from more traditional sources such as healthcare providers, brochures, and email remain important for some populationsCitation6,Citation7. Despite these findings, user preferences regarding these sources and formats remain underexplored.
In addition, the amount and type of health information people seek and prefer is also not clear. Prior research has shown that patients believe it is important to be informed about the results of clinical trials and should receive detailed information regarding themCitation8. Yet, the existing literature provides limited evidence regarding specific topics that people prefer to be included in summaries of clinical trials.
Herein, using a cross-sectional design we surveyed US adults to explore their preferred sources and formats for receiving health communications and information about clinical trials.
Materials and methods
Study design and participants
A cross-sectional survey was administered by Health Literacy Media (HLM) to adult participants ≥ 18 years of age either diagnosed with, or who served as a caregiver for a patient diagnosed with at least one of the following disease conditions: bipolar, blood and solid tumor cancers, irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), major depressive disorder, migraine, Parkinson’s disease, psoriasis/atopic dermatitis, retinal vein occlusion/macular degeneration (RVO/AMD), rheumatoid arthritis, or spasticity. Approval for this study was obtained from a commercial ethics committee.
The participants were recruited via social media, email newsletters, and advocacy organizations. Participants completed an online screener capturing demographic information, such as health conditions, age, race/ethnicity, gender, and education. These responses were reviewed, and participants were selected based on their responses after sorting by disease condition and demographics.
The eligible participants were emailed a link to an online survey assessing their preferred sources and formats for receiving health information, interest in learning about topics related to clinical trial results, and health literacy levels. Prior to accessing the survey, participants were prompted with an informative page describing the survey’s purpose, the approximate time to completion, the collection and use of personal information, and the monetary incentive (Appendix 1). Participants provided informed consent to participate through this informative page. Participants were recruited for each disease condition until the target quota was met (50 participants per disease area) or until November 8, 2022, whichever came first.
Select survey participants were recruited for focus groups for each disease area. The participants who filled out the online screener and showed interest in participating in a focus group were screened by HLM and selected to include a diverse group based on the above-mentioned criteria. Each participant was paid a gift card of $15 for completing the survey and $100 for participating in the focus group.
Separate surveys and focus groups were conducted for three aesthetic indications (facial aesthetics including injectables, cellulite treatment, and body contouring), and the data will be presented elsewhere.
Participant survey and focus group interviews
The online participant survey was developed by the researchers (Appendix 1). It consisted of 14 questions that sought information on whether the participants understood their health condition and treatment, what challenges they faced when looking for information about their health condition or treatment, where they looked for information, and the formats by which they preferred receiving this information. The online survey also asked participants if they were interested in receiving short summaries about the results of clinical trials and their preferred topics to be included in the short summaries. In addition, the survey included the Calgary Charter on Health Literacy scale as a measurement of health literacy, a 5-item instrument that assessed how often individuals find, understand, evaluate, communicate, and act on health informationCitation9. The survey was designed to be completed within 15 min.
The focus group interviews (60–90 min each) further explored these topics in-depth. The focus groups were conducted virtually through Zoom. A trained facilitator followed a standard focus group guide to ensure that the topics were addressed across groups while allowing flexibility in addressing topics important to the participants. The participants were informed that a pharmaceutical company sponsored the survey, though the company’s name was not disclosed.
Statistical analyses
The survey results were compiled by HLM, and only completed surveys were included in the data analysis. HLM transcribed the focus group audio recordings and thematically coded the transcripts to identify key themes. The health literacy score was calculated by individual questions as well as overall, and the overall mean score was utilized for comparisons. Quantitative analyses were conducted that compared differences by education level, age, health literacy level, and by health condition.
Results
Participant characteristics
Of the 5,653 participants screened, 737 (13%) were eligible and received the survey, and 449 (60.9%) completed it. These 449 participants (448 patients and 1 caregiver) were recruited from 45 US states and completed the online survey between August 15 to November 8, 2022. The median age of the participants was 35 years (range, 18–76), 53% were White, and 65% had a bachelor’s degree or higher. The participants had a mean health literacy score of 1.9 (0.4–3.0; ).
Table 1. Demographic characteristics of the survey participants.
Between October 19 – December 13, 2022, 13 focus groups were conducted with 59 participants (58 patients, 1 caregiver). The demographic characteristics of the focus group participants were similar to those who completed the online survey.
Understanding of health conditions and treatment
Most participants (68%) either agreed or strongly agreed that they understood their health condition; 63% either agreed or strongly agreed that they understood how their medicine worked to treat their condition, and 67% either agreed or strongly agreed that they understood the safety of their medicine (). These results were mainly consistent across education levels. Though mostly consistent across age groups, a higher percentage in the 60 or older age group disagreed that they understood their health condition and treatment. A higher percentage of participants with a lower health literacy score disagreed that they completely understood their health condition or said they sometimes understood health information they found.
Figure 1. Responses regarding understanding of health conditions and treatments. Participants were asked how much they agreed or disagreed with the statements provided (top of panels A-C). Those who answered “Neither”, “Disagree”, or “Strongly Disagree” were then asked to select all the challenges associated with their answers to the respective question (bottom of panels A-C).
Among the participants who answered, “neither agree nor disagree,” “disagree”, and “strongly disagree” that they understood their health condition, the main challenge was that information was hard to understand (57%; ). Difficulty understanding information was also the top challenge (52%) regarding understanding how their medicine worked (). Additionally, of those who answered, “neither agree nor disagree,” “disagree”, and “strongly disagree” that they understood the safety information about their medicine, 62% reported that the information was confusing ().
Preferred sources and formats for receiving health communication
In terms of preferences, healthcare providers were rated as the most preferred source of information (59%), followed by Internet searches (11%). Social media (5%), friends/family (3%), and email newsletters (2%) were the least often selected as their preferred source for information. The participants preferred to receive information in multiple formats and ranked reading materials online as most preferred (33%), along with videos (28%) and infographics (27%). Printed material (14%) and audio podcasts (9%) were rated as the least preferred formats.
Participants ranked their preferred formats for receiving health communication in the following order: electronic information (reading online), videos, graphics, visuals, print materials, and audio (). Participants with lower levels of education preferred graphics and printed materials. Younger participants ranked videos, graphics, and audio higher, while older participants ranked these lower (less preferred); participants with low health literacy ranked print materials higher, while those with high health literacy ranked them lower relative to all respondents.
Figure 2. Preferred formats for information ranked by preference. Participants were asked to rank the formats in order of most preferred to least preferred. Percentages indicate the proportion of participants that assigned that ranking to each format. A weighted average was used to determine the relative preference of each format.
Regarding topics of interest, participants were most interested (≥ 40% of respondents) in learning about current treatments (54%), alternative treatments (47%), ongoing clinical trials (42%), and causes of the health condition (41%; ).
Figure 3. Topics of interest in clinical trial summaries. Participants were asked to choose which of these topics they would want included in a clinical trial summary for their health condition.
The focus groups further confirmed that across all surveyed groups, the participants’ preferred source for information about their condition or treatment was their healthcare provider; these providers included specialists, primary care providers or general practitioners, social workers or therapists, and pharmacists. The participants had mixed responses on their preferred formats and generally preferred having a selection of formats from which to choose, including written and visual materials, video, and audio ().
Table 2. Key focus group results and participant quotes.
Interest in learning about results from clinical trials
Most participants (85%) were somewhat to very interested in learning about clinical trials, with the most interest in clinical trial safety (78%) and efficacy (74%) results presented in short summaries. In addition, the participants were also interested in information about the treatment that was tested (59%), what happened during the trial e.g. trial design (54%), how long the trial lasted (49%), and who was in the trial (). In focus groups, nearly all participants across groups said that they were interested in learning about clinical trials for their health condition and would be interested in reading a results summary that included the purpose of the trial, how long the trial lasted, efficacy results of the treatment (if it worked), safety results, and information about the trial participants (). When asked about their preferred sources for clinical trial summaries, responses included healthcare providers, online resources such as websites from pharmaceutical companies and patient organizations, and emailed newsletters ().
Discussion
This cross-sectional study explored participants’ understanding of their health condition, their preferences for receiving health communications, and their interest in receiving clinical trial results across several therapeutic areas. The findings suggest that participants prefer to receive health communications and information about clinical trials through multiple media formats, with healthcare providers being the most preferred source Citation5,Citation10.
Dissemination of clinical trial information to participants and patient communities can improve public trust and encourage people to participate in medical research, raise health literacy, and increase the adoption of health informationCitation11. Partnering with healthcare providers to disseminate accurate, reliable, and accessible information to their patients and the general population is crucial, as evidenced by the high preference for healthcare providers as the most trusted source of information. Prior research has shown that most adults seek health information from their healthcare professional, consistent with our findings that the majority of patients most often preferred their heathcare professional compared with other sources of information. The survey and focus group results suggest that patients don‘t trust alternative sources. It has also been shown that almost twice as many people prefer to receive health information from advocacy/nonprofit organization or health and wellness website than from a drug company or advertisementCitation10. Results from the focus groups showed mixed responses on accessing clinical trial result summaries from pharmaceutical company websites. As industry funded trials grow in prevalence, a considerable amount of new health information will be generated, resulting in an increased need and opportunity to more effectively share clinical trial results with the publicCitation12. It may be advantageous for pharmaceutical companies to partner with healthcare organizations and advocacy groups to mitigate concerns related to company-sponsored materials. This collaborative effort could effectively engage patients by offering comprehensive information about their health conditions and ongoing clinical trials.
The majority of participants in our study faced challenges when searching for information about their health condition as the information was hard to understand and was confusing. These findings shed light on the widespread issue of information complexity and its impact on people’s ability to access and comprehend essential health information. The comprehension of information was a frequent challenge among those who did not understand their condition or treatment, which was reported more often by older and/or less health literate participants. Consistently, the preference for the type and format of material varied among participants according to age and health literacy. Our findings underscore the need for health communicators to use diverse formats, such as online reading materials, videos, and infographics, to reach a wider audience and ensure that people with varying preferences and literacy levels are well-informedCitation10,Citation13,Citation14. In addition, our findings further support the need for materials written in plain language that avoid technical jargon to help patients better understand the health information they receiveCitation15–18. By employing a variety of media formats, partnering with trusted sources, and preparing materials using more widely accessible language, one can cater to different levels of health literacy and learning styles which may help remove barriers to health information and ultimately improve engagement and understanding of health communications.
Limitations
The cross-sectional study design limits the generalizability of the results in addition to the potential for bias due to inaccurate reporting. As this survey was primarily recruited from online sources and was exclusively conducted online, the results may be biased toward computer-literate people who were more likely to seek information. The overrepresentation of participants with higher education levels (Bachelor’s degree or higher) may have introduced a potential bias in the results, as individuals with higher education levels tend to better understand their health condition and treatment than those with lower education levels. Since the study only had one caregiver participant, the findings may not accurately reflect the preferences of the entire caregiver population. In turn, those seeking health information from offline sources may not have been adequately represented. In addition, participants were not presented with the potential risks against the benefits associated with learning about information from clinical trials. For example, if the participants received information suggesting adverse events, treatment resistance, or poor prognosis, this could cause psychological distress and deter them from making healthcare decisionsCitation19,Citation20. Further studies of participant motivations for seeking health information are needed to determine how to disseminate information best to minimize potential harm. Future research should also explore strategies to enhance the role of healthcare providers in delivering health communication and clinical trial information to patients, and how to optimize the use of various media formats, particularly online sources, for better engagement and understandingCitation21.
Conclusions
In conclusion, our study provides valuable insights into people’s preferences for receiving health communications and information about clinical trials. By partnering with healthcare providers, utilizing credible sources, and employing diverse media formats, we may help to enhance people’s engagement, improve their understanding of healthcare and treatment, and enhance the patient’s willingness to participate in future clinical trials.
Transparency
Author contributions
Conception and design: D. Majumdar, D. Webb, S. Parsons, R. Birnberg, A. Kuang; Development of methodology: D. Majumdar, D. Webb, S. Parsons, R. Birnberg, A. Kuang; Acquisition of data: D. Webb.
Analysis and interpretation of data (e.g. statistical analysis, biostatistics, computational analysis): All authors; Writing, review, and/or revision of the manuscript: All authors.
Previous presentations
Part of the data in this manuscript was presented as a poster at the 19th Annual Meeting of The International Society for Medical Publication Professionals held on April 24–26, 2023, in Washington DC, USA, and the Medical Writing & Communication Conference held on October 25–28, 2023, in Baltimore, MD, USA.
Majumdar et al_GSP Pt survey_supplement.docx
Download MS Word (570.1 KB)Acknowledgements
Health Literacy Media (HLM) participated in survey development, data collection, analysis, and interpretation of data, reviewing and approval of the abstract. Brian A. Neel, PhD of AbbVie participated as a passive observer in focus group interviews and summarized insights for the team. All authors participated in the development of the survey research and were actively involved in data interpretation, writing the manuscript, and approved the submitted version. No honoraria or payments were made for authorship.
Declaration of financial/other relationships
DM, SP, LSL, TR, WO, RB, AK: Employees of AbbVie and may own stock. EC is a former employee of AbbVie, currently employed by Arcus Biosciences, and may hold AbbVie stock. DW: Employee of Health Literacy Media. A reviewer on this manuscript has disclosed that they are an employee of Novartis. Peer reviewers on this manuscript have no other relevant financial relationships or otherwise to disclose.
Data availability statement
The data that support the findings of this study are available from AbbVie and the requests for data should be made directly to AbbVie.
Data were de-identified, and approval for this study was obtained from a commercial ethics committee.
Additional information
Funding
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