Table 2 Study characteristics of included studies by digital storytelling method

Audio/visual presentations (video format)

Adams et al./2015/UK

To explore the long-term impact of filmed patient narratives (“patient films”) as sources of meaningful and reliable knowledge

Qualitative—ethnographic evaluation

To provide healthcare providers with stories of patient experience

Healthcare professionals

Educational material

Presenting patient stories encouraged reflection and reflexive learning

The “patient films” were reported as powerfully persuasive

This knowledge was associated with intimacy, “real communication”

Digital stories were contrasted with the disinterested and impersonal expertise of statistics

Benson/2012/USA

To evaluate how digital stories contributed to goals of policy change, engaging community members and increasing understanding of health disparities

Qualitative—community forums, written surveys, structured observations (thesis)

To engage community to increase awareness, and lead to policy change

Patients, caregivers and policy makers

Educational material, community outreach to influence policy

Digital stories provided a fresh perspective of health disparities in an authentic way

Using digital stories in community forum facilitated policy changes in all four areas and promoted community engagement

Canning and Phinney/2015/Canada

To explore the use of data documentary film for accessing the subjective experiences of the participants, and for knowledge translation

Qualitative—visual narrative

To inform healthcare professionals and policy makers in a personal way about living with dementia

Healthcare professionals, policy makers

Educational material, community outreach to influence policy

Using documentary data to hear voices of people with dementia brought the viewer into the experience of participants

The film elicited strong emotions by viewers in a powerful and engaging way

In dementia research, using documentary films as a KT tool is effective for bringing different community members together

Clerici et al./2012/Italy

To investigate the availability and type of video content on YouTube in relation to rhabdomyosarcoma and soft-tissue sarcoma in children

Media review—cross-sectional methods

To share strategies for coping and other available resources

Patients, caregivers and healthcare professionals

Mass media, knowledge exchange

Video-sharing sites such as blogs and social media made it easier for patients to describe their impressions and experiences of the disease

Their experiences helped other patients devise strategies for coping with the disease

Sharing online provided patients with support and opportunities for exchanging information and resources

De Vecchi et al./2016/Australia

To identify how and in what areas digital storytelling has been used in mental health

Scoping review

To enhance relationships between patients and healthcare professionals during the recovery process

Patients, caregivers and healthcare professionals

Educational material, knowledge exchange

May enable consumers, carers and healthcare professionals to work together to learn about, understand and empathize with each other’ s lived experience

Has implications for the development of recovery oriented mental health services

Lack of uptake of this method in research in mental health services may be a missed opportunity

Hardy/2016/UK

To document the development of digital storytelling in healthcare and to examine, the contribution made via the Patient Voices Programme, to the wider genre of digital storytelling

Narrative summary of multiple studies—qualitative methods (dissertation)

To focus on health education, advocacy, and quality improvement

Patients, caregivers, healthcare professionals and policy makers

Mass media, educational material

Patient Voices Programme has developed over 1000 digital stories in health

Patient stories have been used to understand experiences to balance statistical evidence about health experiences

Provided evidence that digital storytelling can be adapted for use in different contexts

Used a solid ethical foundation to protect those sharing stories

Kelly-Hedrick et al./2018/Canada

To (1) describe the video content of the most highly viewed fertility-related YouTube videos and (2) identify video characteristics that relate to viewer favourability (eg, video likes, shares)

Media review—content analysis

To disseminate information about fertility to other patients

Patients and partners

Mass media, knowledge exchange

Reliance on YouTube for infertility information may foster unrealistic expectations regarding the success rates of treatment, which may influence treatment decisions

As fertility patients frequently access the internet for information, research is needed to establish whether YouTube content can affect the perceptions of infertility treatment among fertility patients

Laing et al./2017/Canada

To understand the effect of watching digital stories on healthcare professionals made by (past and present) pediatric and young adult oncology patients, including usefulness, and impact on practice

Qualitative—hermeneutics

To share digital stories with healthcare professionals, as a way to inform and enhance understanding of young adult cancer related experiences

Healthcare professionals

Educational material

Reflective digital storytelling powerfully assisted practitioners to understand patients’ experiences

Both the creation and viewing of digital stories can lead to new insight, understanding, and more generative approaches to care

Viewing digital stories were about understanding an experience versus simply explaining it, and therefore may be at the heart of patient engagement and health care delivery in general

Digital stories have practical implications in health care systems that struggle to do more with fewer resources

Lal et al./2015/Canada

To introduce digital storytelling and to propose how it can be applied in occupational therapy

Narrative review

To review potential uses of digital storytelling in occupational therapy

Healthcare professionals

Educational material

Promising for application within the field of occupational therapy—as a useful tool for therapists, educators, and researchers

Digital stories can facilitate the dissemination of research findings in accessible and engaging ways, conveying key messages to promote the quality of care

Shapiro et al./2009/USA

To learn about patients' lives through making films collaboratively with medical students and patients

Mixed methods—interviews, quantitative evaluations

To understand patients using an engaging and collaborative method

Healthcare professionals

Educational material, knowledge exchange

Students reported that the project affected what they planned to cover in clinic visits, increased their plans to involve patients in care, enhanced their appreciation for patient-centered care, improved their knowledge of community resources, improved their understanding of allied health professionals’ roles, and taught them about patients’ innovative adaptations

Multiple resources with embedded stories

Engler et al./2016/Germany

To investigate how a website that presents narratives of cancer patients is used by other cancer patients, and what users expect and learn from such a website

Mixed methods—log file and survey data analyses, thematic analysis of focus groups

Website with patient stories and videos to enhance knowledge of other patients

Patients and caregivers

Educational material, knowledge exchange

A valuable and beneficial resource that provided a wide range of diverse experiences

Participants used the website to find people with similar characteristics

They reported that the stories helped them to reflect on their own situation and the narratives provided hope and gave them confidence

Marir et al./2014/Dubai

To extract and store knowledge about diabetes diagnosis, diet, lifestyle, medicine, and activities from social networks, patient stories and other text document sources

Media review—text mining

Database of patient experiences to provide information to healthcare professionals about patients with diabetes

Healthcare professionals

Educational material

Knowledge repository can be useful for diabetes based on knowledge discovered from applying text mining to raw textual data collected from social networks MEDLINE medical publication records is feasible

These data were stories of people telling their accounts of diagnosis, i.e. how they found out about it, their lifestyle before, as well as the certain events and actions that led to the realization of the disease

Stellefson et al./2018/USA

This study reviews a free, publicly available online community and support network hosted by the COPD Foundation known as COPD360social

Descriptive summary

Social network for communication and knowledge exchange regarding COPD

Patients, caregivers and healthcare professionals

Mass media, educational material, knowledge exchange, community outreach

COPD360social is an innovative social networking initiative that has improved how patients, caregivers, and practitioners communicate about COPD related research, education, and advocacy

It provided an interactive network that fosters patient education and community engagement

For health education/promotion practitioners, COPD360social served as a reputable, inclusive network for COPD-specific emotional, instrumental, and informational support

Ziebland et al./2015/USA

The DIPEx International project (http://www.dipexinternational.org) is a collaboration of qualitative health researchers which present analyses and hundreds of video and audio interview extracts

Descriptive summary

Videos of patient experiences on a website to be shared as a resource with other countries

Patients, caregivers and healthcare professionals

Mass media, educational material

The Internet presents opportunities to transform the experience of chronic pain and other health conditions by drawing on people’s willingness to share their experiences online

One implication is locally led, culturally appropriate projects to produce e-health resources in developing countries and from marginalized communities in developed countries

Interactive platform/multiple contributors

Chiu and Hsieh/2012/Taiwan

To understand why cancer patients write on the internet, including their blogs and support group sites and how writing and reading other patients’ messages impact their cancer experiences

Qualitative—focus groups, grounded qualitative analysis

Blogs and online forums to exchange information with other patients and caregivers

Patients and caregivers

Mass media, knowledge exchange

Health professionals could help or encourage newly diagnosed cancer patients to write and interact with other patients on the internet to assist them in coping with their illness and acquire social support

Participants reported that sharing stories was therapeutic, meaningful, and empowering

Frohlich/2019/USA

To determine how leaders of online Inflammatory bowel disease communities perceive their responsibility for disseminating health information to other people with inflammatory bowel disease

Qualitative—digital ethnography

Online chat communities (forums) for information dissemination and exchange

Patients and healthcare professionals

Mass media, knowledge exchange

Personal experiences as another kind of health information was sometimes more helpful than technical information

Community members noticed there was little interaction between medical authority and patient authority members

Online communities were used to gain information about how inflammatory bowel disease affects one’s daily life, something medical professionals did not offer

Reid et al./2017/Canada

To work with children attending the pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of narrative-based e-book for pediatric chronic pain

Mixed methods—interviews, feedback, usability evaluation

An e-book of a patient with pediatric chronic pain, based on patient experiences to be shared with parents as a KT tool

Caregivers

Educational material

Parents preferred receiving health information in a narrative form rather than the standard information-based format

Parents preferred the e-book over standard ways of receiving health information, and they were likely to recommend the e-book to others

There was an increase in knowledge about the topic after reading the e-book

Salzmann-Erikson and Hicdurmaz/2017/Sweden

To describe how individuals suffering from post-traumatic stress use social media to communicate authentic narratives of their life conditions

Qualitative—descriptive, netnographic (online qualitative research)

Online communities (forums) for communication and knowledge exchange among patients with PTSD

Patients and caregivers

Educational material, knowledge exchange

Computer mediated communication provided PTSD sufferers a way to reveal themselves, to experience the universality of the problem, to receive support and help from other people, and to fight against stigma

Workshop based digital stories

Cueva et al./2016/USA

To understand (a) how creating a cancer-related digital story affects Alaskan community health aid /professionals’ (CHA/Ps) cancer knowledge, attitudes, and health behaviors, and (b) how the CHA/Ps used digital stories as health communication tools

Mixed methods—group teleconference, end of course evaluation, surveys

Workshop based patient and caregiver experiences videos disseminated in Alaskan communities as a KT tool

Patients and healthcare professionals

Educational material, knowledge exchange, community outreach

Cultural relevance, brevity, reproducibility, and flexibility of digital stories may be widely translated into diverse settings and locales, increasing their impact potential

Indigenous digital stories have the potential to open cancer conversations and impact cancer prevention and detection behaviors to change the story of cancer among Indigenous people

Halter/2015/USA

To learn how the use of digital stories can advance the growing community partnership created in the Yakima Valley and improve and further promote health equity

Qualitative—community Based Participatory Research, interviews and focus groups (dissertation)

Workshops to capture patient experience to advance a community partnership with local health organization

Patients, caregivers and healthcare professionals

Educational materials, community outreach

For storytellers, it provided a healing outlet to critically reflect on a difficult experience and find support within one’s own community

For viewers, digital stories were far more impactful than other forms of health education materials that may not be culturally appropriate or accessible to the members of this population

The engagement process of building capacity and collaborating within a community was an important way for community organizations to foster relationships within the community

Njeru et al./2015/USA

To report on the process and outcomes of the participatory development of a diabetes storytelling intervention as a KT tool

Qualitative—community Based Participatory Research, focus groups

Workshop based digital stories of patient experience for people with diabetes to be shared with the Somali and Latino communities

Patients and caregivers

Educational material, Community outreach

The participatory processes of developing a digital diabetes storytelling intervention to improve type II diabetes management with Somali and Latino participants may be useful for other partnerships seeking to develop homegrown interventions to address local health concerns with and for community partners