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Patient narratives are illustrative, individual accounts of patients’ experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies.
This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals.
We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist.
Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions.
Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions.
In their recent report, the
Patient narratives are illustrative accounts of individual patients’ experiences with a certain illness [
Patient narratives are a promising tool that can support people in coping with their illness [
Several qualitative studies report that illness narratives enjoy high acceptance among other patients [
On the contrary, there are also serious concerns about the use of patient narratives because they are powerful message formats [
In recent years, internet platforms, patient blogs, and fora have become important means for individuals to seek information relevant to health, including information describing how other individuals live with illnesses. Such websites often provide biomedical information but lack information on wider experiences [
This systematic review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for patients, relatives, or health care professionals. Patient narratives are understood as immediate personal experience reports.
This review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines [
Titles and abstracts of the retrieved studies were reviewed and assessed for inclusion and exclusion criteria independently by all members of the study team (DD, AG, MH, and NB). Researchers were trained in applying the predefined selection criteria. Nonagreements were discussed until consensus was reached. Papers were included if they (1) studied (potential) patients (with or without an established diagnosis or condition), relatives (or other nonrelated informal caregivers), or health care professionals; (2) studied the effects of Web-based patient narratives (real experiences or fictional stories; collections or single narratives; presentation as text or audio or video clips) that were generated scientifically (eg, through qualitative research methods and not just stories put selectively on the Web with a view to their human interest for marketing purposes); and (3) were quantitative studies such as surveys and questionnaires, observational studies, nonrandomized controlled trials (non-RCTs), RCTs, comparative effectiveness research, cohort studies, or longitudinal studies. We excluded studies that used qualitative study designs such as interview studies, focus groups, or ethnographic studies and studies that were neither published in English or German. Studies that used narratives that were not generated by a scientific method were also excluded (eg, unmoderated blogs or fora). Furthermore, we excluded studies published before 2000 and studies that examined narratives not Web-based. We made no restrictions on the inclusion of studies regarding content, context, length, or depth of the narratives. We decided to focus on Web-based narratives as we felt the range would have been too broad to allow for meaningful comparisons had we included narratives available in different media (books, leaflets, newspapers, etc).
A protocol was written about all the steps of data collection and analysis, including selection of studies and extraction of content. Researchers were trained in applying the predefined selection criteria. Overall, 3 researchers reviewed and assessed all studies (DD, AG, and MH), whereas nonagreements were discussed with a fourth independent expert (NB). Evaluation tools designed for conventional systematic reviews typically assess the quality of RCTs. However, the diversity of research designs and outcome measures of the included studies required the use of a tool that is able to systematically appraise disparate evidence stemming from different study types. Therefore, 2 authors (DD and AG) independently performed an assessment of the quality of the included studies using the checklist proposed by Hawker et al [
A data elicitation form was developed and applied systematically to all publications included in the review by 1 author (DD). The form includes information about background characteristics (authors, year of publication, and location), study characteristics (aim, sample size, participants, and study design), narrative (type of narrative and degree of exposure), study measures (attitudes and beliefs, psychometric scales, and preferences), and a summary of findings.
We extracted study results as they were reported in the results section of the publications. The analysis was based on the comparison of study details using descriptive statistics and text. The analysis was mainly focused on the identification of similarities and differences between the findings of the individual studies. As the study aims, designs, and findings were too heterogeneous, a meta-analysis was not conducted.
The specific outcomes of the studies were grouped using the taxonomy proposed by Shaffer and Zikmund-Fisher [
Purposes of narratives.
Purpose | Possible outcomes |
Inform |
Increased knowledge Improved affective forecasting |
Engage |
Greater engagement Greater transportation (increased depth of processing) Greater time spent with materials |
Model behavior |
Increased participation in health care decisions Increased shared decision making Altered behavioral intentions Increased uptake of target behaviors |
Persuade |
Altered behavioral intentions Increased uptake of target behaviors |
Comfort |
Reduced psychological distress Reduced anxiety |
The definition of
Our search strategy identified 4226 documents. Of these, 60 documents potentially fulfilled the inclusion criteria of the study and were assessed in full text. After assessing the full texts, 43 more studies were excluded for specific reasons, including, eg, the study did not focus on systematically generated narratives or the narratives were not Web-based. There were 95.50% (4036/4226) agreements among the raters. Finally, 17 studies were included in the analysis (
Study flowchart.
The studies were taken from Germany (n=5), the United States (n=6), the United Kingdom (n=4), the Netherlands (n=1), and Switzerland (n=1) and covered the period from 2000 to 2018 (
Characteristics of the included studies.
Authors (year) | Country applied | Sample size | Name of database | Degree of exposure to the narrative (eg, length of stay on a website) |
Aardoom et al [ |
Netherlands | 311 | Proud2Bme | Mean time in months since first website visit: 19.8. Participants indicating to visit the website every day to several times a day: 189/247 (76.5%) |
Allam et al [ |
Switzerland | 157 | ONESELF | Mean visits to the website: 53.68 (SD 93.07) |
Betsch et al [ |
Germany | 385 (study 1: 72; study 2: 313) | Online bulletin board | NRa (paper-and-pencil version of an online bulletin board) |
Betsch et al [ |
Germany | 458 | Simulated website similar to the website |
Mean time in minutes to complete the study: 9.94 (SD 3.49) |
Brunette et al [ |
United States | 39 | Let’s Talk About Smoking | NR |
Engler et al [ |
Germany | 23 | DIPExb | NR |
Giesler et al [ |
Germany | 212 | DIPEx | Mean time in minutes on the intervention website: 42.21 (SD 45.64, median 26) |
Newman et al [ |
United Kingdom | 37 | DIPEx | NR (paper-and-pencil survey) |
Shaffer et al [ |
United States | 302 | Web decision aid | Mean time in minutes on the intervention website: 5.38 (SD 2.37); mean time in minutes on the control website: 4.92 (SD 2.03) |
Shaffer et al [ |
United States | 56 | Web decision aid | Mean time in seconds on different pages with text narratives: 5.00-67.28; mean time in seconds on different pages with video narratives: 15.11-117.19 |
Shaffer et al [ |
United States | 200 | Web decision aid | Length of narrative video: approximately 1 hour |
Schweier et al [ |
Germany | 571 | lebensstil-aendern | Website usage in the intervention group: 46.1% (119/258); website usage in the control group: 7.0% (22/313) |
Snow et al [ |
United Kingdom | 88 | DIPEx | Expected time to complete the module: 20 min. No time limits were set. Participants could watch the videos multiple times |
Sullivan et al [ |
United States | 2125 (study on acid reflux: 1070; study on high blood pressure: 1055) | Simulated prescription drug websites | All participants were exposed to the video. Participants that viewed the entire video: 94.86% (1015/1070) (acid reflux) and 98.66% (1041/1055) (high blood pressure). Participants that replayed the video: 7.5% (acid reflux) and 6.8% (high blood pressure) |
Winterbottom et al [ |
United Kingdom | 1694 (study 1: 578; study 2: 1116) | Web decision aid | NR |
Wise et al [ |
United States | 353 | Comprehensive Health Enhancement Support System | No directives for the frequency of website use was given. Access to the website was given for four months. |
Yaphe et al [ |
United Kingdom | 309 | DIPEx | NR |
aNot reported.
bDIPEx: Database of Individual Patients’ Experiences.
Sample sizes of the studies ranged from 23 to 2125 (samples of the following substudies were combined: Betsch et al [
The degree of exposure to the narrative was reported by 11 out of 17 studies. The reporting included measures such as self-reporting regarding frequency of website visits [
The mean score of the quality assessment was 84.5 (range 61-100). The main issues were concerning appropriate sampling strategies [
Quality assessment of included studies.
Authors (year) | Abstract and titlea | Introduction and aimsa | Method and dataa | Samplinga | Data analysisa | Ethics and biasa | Resultsa | Transferability or generalizabilitya | Implications and usefulnessa | Scaled overall scoreb |
Aardoom et al [ |
8 | 8 | 8 | 6 | 8 | 8 | 8 | 7 | 6 | 90.6 |
Allam et al [ |
8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 100 |
Betsch et al [ |
8 | 8 | 8 | 4 | 7 | 2 | 7 | 5 | 6 | 68.4 |
Betsch et al [ |
8 | 8 | 8 | 8 | 7 | 2 | 7 | 8 | 8 | 85.2 |
Brunette et al [ |
8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 100 |
Engler et al [ |
8 | 6 | 7 | 8 | 5 | 8 | 8 | 6 | 6 | 81.5 |
Giesler et al [ |
8 | 8 | 8 | 8 | 7 | 8 | 8 | 8 | 8 | 98 |
Newman et al [ |
8 | 8 | 4 | 4 | 4 | 8 | 6 | 4 | 6 | 63 |
Shaffer et al [ |
8 | 8 | 8 | 6 | 8 | 8 | 8 | 8 | 6 | 92.6 |
Shaffer et al [ |
8 | 8 | 8 | 5 | 6 | 2 | 6 | 5 | 8 | 70.4 |
Shaffer et al [ |
8 | 7 | 7 | 6 | 5 | 6 | 6 | 4 | 8 | 72.1 |
Schweier et al [ |
8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 100 |
Snow et al [ |
8 | 8 | 8 | 8 | 8 | 7 | 8 | 8 | 8 | 98 |
Sullivan et al [ |
8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 8 | 100 |
Winterbottom et al [ |
7 | 8 | 8 | 4 | 4 | 8 | 8 | 5 | 6 | 74.1 |
Wise et al [ |
8 | 8 | 8 | 7 | 7 | 2 | 8 | 6 | 8 | 81.5 |
Yaphe et al [ |
8 | 7 | 6 | 7 | 4 | 2 | 6 | 4 | 7 | 61 |
aSum score ranging from 2 to 8.
bScaled overall score ranging from 0 to 100.
The study design varied among the included studies (
Description of study methodologies.
Authors (year) | Study design | Measures (attitudes, psychometric scales, preferences, behavior, etc) | Type of participants |
Aardoom et al [ |
Cross-sectional (descriptive online survey) | Eating psychopathology, general empowerment, symptom duration, treatment status, and user activity | Website visitors who indicated having eating problems |
Allam et al [ |
5-arm parallel randomized controlled trial | Physical activity, health care utilization, medication overuse, empowerment, and rheumatoid arthritis knowledge | Individuals diagnosed with rheumatoid arthritis |
Betsch et al [ |
Factorial between-subjects design | Perceived risk of side effects and vaccination intentions | Students |
Betsch et al [ |
Factorial between-subjects design | Perceived risk, vaccination intention, and subjective numeracy | General population |
Brunette et al [ |
Pre-post pilot study | Use of cessation treatment | Individuals smoking ≥4 cigarettes |
Engler et al [ |
Mixed method approach including log file analyses, descriptive survey data analyses, and thematic analysis of focus group discussions (only quantitative results are extracted). | Attitudes toward health-related websites in general, perception of krankheitserfahrungen.de in particular | Individuals diagnosed with colorectal, breast, or prostate cancer |
Giesler et al [ |
Randomized two-group between-subjects design with repeated measures. | Coping self-efficacy and patient competencies | Individuals diagnosed with colorectal cancer |
Newman et al [ |
Mixed method. The study involved three stages: (1) focus groups guided the development of a descriptive questionnaire, (2) the questionnaire was modified, and (3) a sample of outpatients was asked to complete the questionnaire. (Only quantitative results are extracted.) | Attitudes toward the website | Individuals diagnosed with an inflammatory rheumatologic condition |
Shaffer et al [ |
Factorial design | Information search, treatment intentions, and decision satisfaction | Women from the general population who were not pregnant and without a breast cancer history |
Shaffer et al [ |
Factorial design | Treatment preference | Women from the general population who were not pregnant and without a breast cancer history |
Shaffer et al [ |
Factorial design | Treatment preference | Women from the general population who were not pregnant and without a breast cancer history |
Schweier et al [ |
Sequential controlled trial | Diagnosis, BMI, baseline behavior for physical activity, eating routine, exercise frequency and attention paid to healthy diet, and improvements in physical activity and eating behavior | Individuals diagnosed with coronary heart disease |
Snow et al [ |
Exploratory randomized controlled trial | Knowledge demonstration and clinical examination with a simulated patient | Medical students |
Sullivan et al [ |
Factorial design | Risk perception | Individuals with self-reported acid reflux or high blood pressure |
Winterbottom et al [ |
Factorial design | Hypothetical treatment choice | Students |
Wise et al [ |
Secondary analysis | Health care participation and online information use | Women diagnosed with breast cancer |
Yaphe et al [ |
Cross-sectional (descriptive survey study) | Whether and how patients’ stories are collected and used | Self-help groups |
Effects of narratives on outcomes taxonomy.
Taxonomy, outcome, authors (year) | Effect direction | ||||
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Risk | No effect | Benefit |
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Giesler et al [ |
N/Aa | Xb | N/A |
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Snow et al [ |
N/A | N/A | X |
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Allam et al [ |
N/A | X | N/A |
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Engler et al [ |
N/A | N/A | X |
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Aardoom et al [ |
N/A | N/A | X |
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Allam et al [ |
N/A | N/A | X |
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Shaffer et al [ |
N/A | N/A | X |
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Shaffer et al [ |
N/A | N/A | X |
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Engler et al [ |
N/A | N/A | X |
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Newman et al [ |
N/A | N/A | X |
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Yaphe et al [ |
N/A | N/A | X |
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Schweier et al [ |
N/A | X | N/A |
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Allam et al [ |
N/A | N/A | X |
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Wise et al [ |
N/A | N/A | X |
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Allam et al [ |
N/A | N/A | X |
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Allam et al [ |
N/A | N/A | X |
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Schweier et al [ |
N/A | X | N/A |
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Betsch et al [ |
X | N/A | N/A |
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Betsch et al [ |
X | N/A | N/A |
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Sullivan et al [ |
X | N/A | N/A |
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Betsch et al [ |
X | N/A | N/A |
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Betsch et al [ |
X | N/A | N/A |
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Brunette et al [ |
N/A | N/A | X |
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Shaffer et al [ |
N/A | X | N/A |
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Winterbottom et al [ |
X | N/A | N/A |
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Shaffer et al [ |
N/A | N/A | X |
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Snow et al [ |
N/A | N/A | X |
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Giesler et al [ |
N/A | X | N/A |
aNot applicable.
bEach X represents an individual study reporting statistically significant risks, no significant effects or statistically significant benefits.
Giesler et al [
Allam et al [
A study by Aardoom et al [
Participants viewing narratives relating how a patient makes her decision were found to spend more time searching for information regarding breast cancer (narrative condition, mean 5.38 min, SD 2.37, vs no narrative condition, mean 4.92 min SD 2.03 [
Findings showed that learning about other peoples' health-related experiences is relevant and helpful [
A statistically significant positive effect on physical activity was reported by Allam et al [
A total of six studies investigated the effects of narratives on risk judgments [
Furthermore, two studies [
In addition, one pilot study investigated the effect of a website that aimed to engage smokers in a cessation treatment [
Snow et al [
Giesler et al [
There is an increasing number of Web-based sources containing research-based, systematically generated accounts of patient illness and health experiences. Although the evidence on the persuasiveness of narrative information on individuals’ decision making was reviewed over a decade ago [
Our review revealed several beneficial effects for patients and health care professionals. Web-based narratives are an effective way of teaching to improve knowledge and confidence for students as well as for patients [
Another identified benefit is that participants viewing narratives that contain information on how patients make decisions result in longer search times for information [
On the basis of the findings of this review, it remains unclear whether patient narratives can influence patients’ target behavior. The results regarding physical activity are equivocal [
Even though we identified several benefits of patient narratives on the different purposes of narratives, overall, there is little evidence for the effects of Web-based patient narratives in a positive or negative way. The total number of studies we included in the review is small, which is especially challenging in the light of the heterogeneity regarding the sampled population, the study aims, and the heterogeneity of the narratives in itself. Furthermore, the purposes of the narratives presented on the different websites vary considerably from each other. However, patient narratives are not homogenous and have to be evaluated in their context with regard to content, purpose, and patients’ evaluative expression, such as expressions of (dis)satisfaction with processes of health care decision making [
Almost one-third of the included studies used study samples that cast doubts whether the results can be generalized to broader patient populations [
At the same time, narratives can bear potential risks in preference-sensitive decisions [
Qualitative studies focusing on how individuals use and value personal health-related experiences [
Our study has several limitations. First, we searched only for papers published in journals, and only in English or German. Papers that were published in books or reports are often not indexed in the databases we have chosen for our search strategy and are therefore not included. Therefore, we may have missed some studies published in languages or places outside our scope. Second, we reviewed only published studies regarding patient narratives. Therefore, we may potentially be confronted with a publication bias in such a way that, eg, negative study results were not published. Third, we decided to include only studies that focused on Web-based narratives and that were generated through a research methodology. Although we have done so to ensure comparability among the studies, we also acknowledge that this decision has led to an exclusion of several studies that investigated the effects of non–Web-based narratives or generated in an unstructured, non–research-based way, eg, in chatrooms or fora. Narratives are valuable resources for the narrators themselves, for other patients and their relatives, and for health care professionals and researchers. Despite the limitations, our findings might be helpful for health care professionals and researchers to understand the possible effects of narratives in health care settings.
In total, we found 17 studies on the effects of Web-based patient narratives. The effects of narratives were classified by purpose—inform, engage, model behavior, persuade, and comfort—using the taxonomy provided by Shaffer and Zikmund-Fisher [
Search terms.
Investigated databases and descriptions.
Database of Individual Patients’ Experiences
electronic health
odds ratio
randomized controlled trial
The authors would like to thank Kevin Selby, Erik von Elm, and Nina Streeck for helpful comments on the setting up and drafting of this review.
All the authors declare that their institution is in charge of DIPEx Switzerland.