Table 3 Characteristics of included studies

Beck et al., 2014 [58]

Documentary analysis

Timeframe not reported

Data of about 157 celebrities, including athletes, actors, musicians, and politicians, who disclosed private information regarding a personal health situation (or that of a loved one) with others in the public domain were collected by authors

Health topic: Multiple sclerosis, cancer, Parkinson’s disease, Alzheimer’s disease, HIV, Hugh Downs, bipolar II disorder, eating disorder, diabetes, paralysis, cystic fibrosis, amyotrophic lateral sclerosis

Target population: Congress, national research organisations, professional associations, and general public

Organiser: Celebrities or their family members

Country: United States of America

Narrative boundaries, informed by the theory of Communication Privacy Management

“Construction of narrative may be understood from performative and dialogical perspectives as always a joint enterprise with an active audience”

Format: Brief comments in the tabloids, interview on television or for a magazine about a condition, and verbal (narrated)

Characteristics of narratives: Not reported

Some celebrities have established foundations which focus on raising money and/or awareness while others have testified before Congress on behalf of themselves or their loved ones for specific diseases

Agenda-setting:

Key functions that celebrity health narratives performed included education, inspiration and activism (e.g. after hearing the story of Michael Zaslow, one senator committed to doubling funding for research at the National Institutes of Health so that they can treat and cure diseases such as amyotrophic lateral sclerosis).

Although celebrities bring much attention to a cause on behalf of individuals suffering from it, the authors questioned whether such advocacy should frame federal priorities in terms of funding

Fitzgerald, 2013 [44]

Case study

In 2006, 2010 and 2011, attempts were made by health policy advocates to ignite policy debate about the introduction of supervised injecting facilities in Australia; despite numerous attempts, only one facility has been introduced in Sydney, thus this article retraces the policy narratives to reflect on the causes for policy impermeability

Health topic: Supervised injecting facilities (SIF) for drug users

Target population: Government

Organiser: Author and other advocates for implementation of policies supporting supervised injecting facilities

Country: Australia

Narrative Policy Framework approach

“A policy narrative is the story about a policy idea embedded in documentation about the idea. Like any story, the narrative describes the idea, frames the policy and connects the idea with other ideas and ultimately directs those in the policy arena to solutions to problems”

Format: Photographs and videos portraying drug users

Characteristics of narratives: In Sydney, villains of police corruption and police cynicism were prominent in the Wood Royal Commission that framed SIF policy development, whereas in the Melbourne context, the policy narratives focused on health and police were cast alongside the drug outreach workers as heroes who would clean up the streets with the real villains being drug users

In Sydney and Melbourne, two front-page newspaper photographs reoriented the SIF policy narrative, and the policy narratives took different directions:

In Sydney, the Sydney Sun Herald photograph of a teenage boy injecting in the backstreets of Redfern was the catalyst for commitment to the 1999 drug summit and mobilising support for a SIF, especially since the police could not be trusted to provide order. In Melbourne, the Melbourne Herald Sun page 1 photograph captioned “How can we stop this?” reinforced a zero-tolerance policing response with quest for order reinforcing the authority of the police, thus undermining the legitimacy of the SIF policy

Pictures were complemented by trials, reports, royal commissions and advocacy

Policy adoption:

In Sydney, 22 months after the Drug Summit Legislative Response Act 1999 was passed for the trial of the supervised injecting facilities, the service opened in May 2001.

In Victoria, the bill failed to pass through both Houses of the Victorian Parliament

Johnson et al., 2014 [43]

Case study

Time frame not reported

Concerns about barriers facing individuals with intellectual disabilities in expressing their sexuality or in having sexual relationships, prompted individuals with intellectual disabilities to conduct research where they tell their life stories and talk about sexuality and relationships, with findings subsequently used to promote change

Health topic: Sexual lives and relationships of people with intellectual disabilities

Target population: Government and general public

Organiser: Individuals with intellectual disabilities and their advocates

Country: Australia and the Republic of Ireland

Not reported

Format: Short films, theatres and plays, and formal presentations

Australia: Three short films of the stories of people with intellectual disabilities

Ireland: Stories of people with intellectual disabilities provided the basis for a creative analysis in the form of theatre and plays

Characteristics of narratives: not reported

Australia: Short films of the stories of people with intellectual disabilities were used by organisations that had been part of the advisory group to lobby government for a change to the existing policy in relation to people with disability and sexuality

Ireland: Use of theatre and plays brought the group to the notice of the media. Research, drama and media appearances brought the issue of the prohibition under Irish law of penetrative sexual activity with a person with intellectual disabilities to public attention and two representatives from the research group were invited to consultations with government legislative advisory body with regard to reviewing the 1993 Act in March 2011

Australia – Policy formulation:

Drafting of a new policy for state government in relation to sexuality and relationships and people with disabilities which state that people with disabilities had rights to relationships and to a sexual life, and set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality

Ireland – Agenda-setting:

The 1993 Act in the Republic has not yet been changed, but there is now a significant voice from people with intellectual disabilities informing discussion of how this might happen

Krueger, 2007 [51]

Case study

Throughout mid-to-late twentieth century, cancer-related organisations began integrating the voices, images and stories of young sufferers into their annual campaigns for the disease, although children represented only a small fraction of all persons with cancer

Health topic: Early cancer detection

Target population: Donors, philanthropists, public and politicians

Organiser: Publicists and cancer campaigners in the mid-twentieth century

Country: United States of America

Not reported

Format: Poster children with all-American attributes and interests (i.e. appealing to regional donors, personified cancer and served as reminder that cancer did not spare children)

Characteristics of narratives: “Heroic accounts and images of children illustrating possibility of remission and tumor regression continued to be selective in nature, carefully crafting optimistic ‘cure’ or ‘hope’ stories to raise money for cancer research that ignored negative realities”

Staged photographs of children with cancer standing side by side with famous personalities, vividly demonstrating the efficacy of new cancer therapies at annual fund-raising conventions, or celebrating holidays in hospital wards elevated viewers’ emotional tie to the cancer. Sentimental images paired with frightening captions and text sent parents a stern warning that any child, every child or even their child was vulnerable to the threat of this disease

Agenda-setting:

More attention to children cancers: “Poster children were strategically used throughout the mid-to-late twentieth century to advance principles of early cancer detection and prompt treatment; to illustrate or, at times, exaggerate promising biomedical advances in the field; and to elicit emotional responses and donations from a wide audience during the escalation of the war against cancer”

Lander, 2007 [59]

Biographical method

Mifepristone, which could halt the growth of certain tumours, is unapproved in Australia because it interferes with progesterone levels (i.e. an abortifacient); in 2005, the author triggered the campaign to amend the legal status of the drug when she was diagnosed with meningioma

Health topic: Approval of the drug mifepristone for use as a treatment for meningioma

Target population: Legislators

Organiser: Mary Lander (article author) who was diagnosed with meningioma

Country: Australia

Not reported

Format: Verbal (face-to-face encounters) and broadcasts

Characteristics of narratives: Not reported

Mary Lander contacted the Senator leading the Australian Democrats. The Senator found out that the drug could be obtained through the Special Access Scheme of the Therapeutic Goods Administration.

On 7 September 2005, the Senator gave a speech in Parliament entitled “Matters of public importance – mifepristone”, launching the campaign to amend the legal status of the drug.

Mary Lander participated in some broadcasts

Policy adoption:

Parliament successfully voted to repeal ministerial responsibility for approval of the drug mifepristone in early 2006

Leith and Phillips, 2006 [46]

Case study

In 1994, the Optional Coverage for Women and Infants programme under Medicaid was greatly endangered due to proposed legislative budget cuts. Advocacy summaries were used to demonstrate to legislators the need for continuing the programme

Health topic: Optional Coverage for Women and Infants programme under Medicaid

Target population: Legislators

Organiser: A state agency in a south-eastern state

Country: United States of America

Not reported

Format: Advocacy summaries that gave a qualitative description of personal experiences of callers with the programme

Characteristics of narratives: Not reported

State agency ran a Medicaid Advocacy Hotline, which handed calls from pregnant women, mothers of young children and other family members from across the state. Information collected from the hotline was used to create thousands of advocacy summaries consisting of brief narratives of 3 to 8 sentences, compiled by county and by month/year. Advocacy summaries were shared on a monthly basis with a state-wide interagency maternal and child health ‘Access Task Force’

Policy adoption:

Optional Coverage for Women and Infants programme was “spared from proposed legislative budget cuts”

Lorenzo, 2008 [57]

Qualitative research approach using participatory action research (PAR)

Time frame not reported

People from impoverished communities struggled to gain daily access to economic and social resources because of long distances, inadequate public transport facilities as well as overall poor levels of service

Health topic: Disabled women mobilising for an accessible public transport system

Target population: Government and disabled women

Organiser: Disabled People South Africa’s Disabled Women’s Programme in the Western Cape, the South African Christian Leadership Assembly Health Project, and Department of Occupational Therapy at Cape Town

Country: South Africa

Interpretive Critical Theory Paradigm

Format: A series of narrative action reflection workshops as an innovative method that enables storytelling and action learning collectively rather than on a one-to-one basis

Characteristics of narratives: Not reported

Storytelling and action learning between workshops were captured through videotapes, audiotapes, scribing, field notes and photographs.

Findings were disseminated through seminars, conferences, narrative action reflection workshop, documentations, and writing up research

Agenda-setting:

“Findings contributed to increased understanding and awareness of disability issues for individuals involved in policy development and implementation across the various sectors of government to improve service delivery mobilising for an accessible public transport system”

MacGregor and Mills, 2011 [52]

Case study

In 2003, as part of a campaign to secure treatment for HIV drugs for all, a group of women involved with the Treatment Action Campaign and Medicines Sans Frontières participated in an initiative to ‘map’ their bodies as affected by HIV

Health topic: Right to HIV treatment

Target population: Government

Organiser: Medicines Sans Frontières

Country: South Africa

Not reported

Format: Body mapping (an innovative narrative and art therapy) through which women tell how their lives have been transformed by antiretroviral treatment

Characteristics of narratives: Not reported

A book, ‘Long Life: Positive HIV Stories’, containing the women’s body maps and narratives was published and used as a political tool to add the ‘voices’ of ordinary people to the campaign to lobby for treatment for all

Policy implementation:

Roll out of universal access to antiretroviral treatment drug in the public sector

MacKenzie et al., 2008 [54]

Case study using frame analysis

In 2007, Clare Oliver was dying from melanoma at the age of 26; in the last months of her life, she campaigned strongly against the use of tanning beds and called for a ban

Health topic: Solarium tanning

Target population: Government, media and the general public

Organiser: Clare Oliver

Country: Australia

Not reported

Format: First person accounts, television and print media coverage of the campaign

Characteristics of narratives: Not reported

The policy changes were thought to result from the combination of powerful personal stories of people whose melanoma was associated with use of tanning beds, media advocacy, political representation and lobbying, and epidemiological evidence

Policy adoption:

regulation of the solarium industry (e.g. banning access to tanning beds for those younger than 18 years)

Marcus, 2010 [53]

Case study

A cancer survivor who became a patient advocate and navigator shared his experiences with TV writers; the storyline, entitled “You Don’t Cut into Cancer”, first aired on April 21, 2005

Health topic: Patient navigators for chronic diseases

Target population: Congress

Organiser: Representatives of the National Cancer Institute at the National Institutes of Health and writers from the NBC medical drama ER, as well as Hollywood, Health and Society advisory board

Country: United States of America

Not reported

Format: Primetime network TV storyline addressing cancer patient navigators

Characteristics of narratives: Storyline featured an elderly African-American woman who avoided surgery for a lump in her breast because she believed that cutting into cancer would cause it to spread. A physician arranges for a visit with an African-American breast cancer survivor who is also a patient navigator. The survivor shares her experience with Mrs Graham and offers to help. As the episode ends, Mrs Graham appears willing to receive treatment

Clips of the episode were shown to raise awareness of patient navigators in a Congressional Committee meeting.

Congressional staffers report that the episode provided a tangible example of how patient navigator programmes would work

Policy adoption:

The storyline contributed to critical policy discussion that led to passage of United States law HR 1812, the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005

Neuhausen, 2013 [48]

Case study

Grady, the fifth-largest public hospital in and the largest provider of indigent care in Georgia, was caught in a ‘perfect storm’ of economic troubles. Medical students led a year-long campaign in 2007 to fight for a vital safety-net hospital in Georgia

Health topic: Safety-net hospital ‘Grady’ for poor and uninsured residents

Target population: Legislators and governors

Organiser: Students and resident physicians under the lead of ‘Health Students Taking Action Together (HealthSTAT)’

Country: Georgia

Not reported

Format: Scripted narrative (stories from Grady patients were collected to create patient story cards with photos of patients on the front and quotes on the back)

Characteristics of narratives: In one card, the front included a middle-aged African American man looking back with tired eyes. The back of his card read: “When my health was failing, I lost my job and was left without insurance. I turned to Grady when my heart failure worsened to the point where I had to be hospitalised. Since then, I have gotten back on track, working with my doctors and nurses at Grady to make sure that I keep myself healthy and out of the hospital. I want to give what I can to help this hospital because I know there are many more people out there just like me who cannot afford to have Grady close”

Stories collected from Grady patients of the life-saving care provided by Grady, were described as the most powerful advocacy tool.

Patient stories were complemented by a range of activities, including State-wide campaign to get state legislature to increase state funding; writing to governor, lieutenant governor, or speaker of the House, asking them to increase state support to Grady; talking one-on-one with the legislators; inviting legislators to visit Grady to gain first-hand experience; and testifying on day of Commissioners’ vote on Grady’s central role in caring for the working poor

Policy adoption:

Commissioners voted to approve the non-profit conversion which was critical to Grady’s survival.

Georgia General Assembly approved increases in Medicaid reimbursement rates to trauma hospitals and authorised US$58 million to support uncompensated care at state trauma centres

Rosenbaum, 2016 [56]

Case study

In 2013, Amy Reed, underwent a hysterectomy with intraoperative morcellation for presumptively benign uterine fibroids. The tumour turned out to contain leiomyosarcoma (LMS), a rare aggressive cancer, and the procedure resulted in dissemination of the cancer

Health topic: Use of morcellators in gynaecologic surgeries

Target population: Legislators, government, medical profession, public

Organiser: Amy Reed’s husband Hooman Noorchashm, then a cardiac surgery fellow

Country: United States of America

Not reported

Format: Verbal and print

Characteristics of narratives: Availability bias exaggerated the risk of LMS with media coverage featuring the faces of women dying of LMS, ravaged by chemotherapy, flanked in photos by their husbands and young children. Meanwhile, the benefits of morcellation are largely invisible and thus “unavailable”

Reed’s husband launched a campaign to ban morcellators. The Wall Street Journal picked up the story in December 2013. Subsequently, the Food and Drug Administration undertook a review to quantify the risk of disseminating occult uterine cancers that cannot be reliably detected preoperatively. The resultant safety communication, was issued in April 2014

Policy implementation:

FDA issued a black-box warning stating that morcellation was contraindicated in perimenopausal or postmenopausal women and in “candidates for en bloc tissue removal”.

Many institutions banned morcellation and some insurers stopped covering the procedure or began requiring prior authorisation.

Author argues that there may be greater population benefits and lesser risks from continuing than from discontinuing morcellator use, thus claiming anecdote can skew risk perception

Sharf, 2001 [33]

Case study

In 1975, Kushner, a journalist and cancer survivor, put her investigative skills to use in understanding the cancer that afflicted her.

In 1993, Nelene Fox, a 38-year-old mother was diagnosed with advanced breast cancer and was advised that her only remaining chance for survival was an autologous bone marrow transplant (ABMT), which her insurance refused to pay for ($US 140,000) because of insufficient scientific evidence to prove its efficacy;

Senator Tom Harkin’s interest in breast cancer was influenced by the death of his only two sisters at a young age from breast cancer, without ever doing a mammogram

Health topic: Breast cancer

Target population: Cancer establishments, legislators, Congress, public

Organiser: Patients with breast cancer and advocates

Country: United States of America

“Personal narratives are powerful, rhetorical strategies, as well as humane expressions of suffering and memorials to loved ones. The riveting communication of such narratives enlightens our understanding of what it means to live with breast cancer”

Format: Personal narratives of patients living with breast cancer elicited through conversations, popular books, newspapers and magazines, and television

Characteristics of is: Not reported

Kushner wrote a book, entitled ‘Breast Cancer: A Personal History and an Investigative Report’, which provided a brief account of her own illness, with a lengthy analysis and critique of the then current epidemiological and clinical approaches to breast cancer. Her book was excerpted in newspapers and women’s magazines, and remained in circulation until the early 1990s.

Fox’s brother, a lawyer, sued the insurance and convinced the jury to award $89,000 in damages to her family. Similar lawsuits with similar results soon followed, further fuelled by media publicity. Questions that many physicians had about the efficacy of ABMT were compounded by prolonged difficulty in recruiting enough subjects for controlled clinical trials.

Senator Harkin has championed funding of medical research for breast cancer over the past decade, characterising it as “a leading killer”

Policy implementation:

Kushner’s efforts resulted in a change of standard clinical procedure to the two-step biopsy and treatment decision.

Fox’s story succeeded in forcing widespread insurance reimbursement for ABMT even though there was little or no data to support this choice, further discouraging patients from enrolling in clinical trials. Thus, conclusions about the lack of efficacy of the treatment for patients with breast cancer were delayed until 1999.

Senator Harkin’s legislative achievements included dramatically increasing funding of breast cancer research and creating treatment, prevention, and screening programmes for lower-income women

Shi, 2014 [49]

Case study

In June 2012, Feng Jianmei, a 23-year-old Chinese woman, was forced to have late-term abortion by local birth-control officials

Health topic: Birth control;

Target population: Public, government

Organiser: Family members of Feng Jianmei

Country: China

Not reported

Format: Graphic photos of the woman with the aborted fetus, micro-blogs and online forums

Characteristics of narratives: Not reported

Jianmei's story was exposed by family members and went viral, provoking public outrage and widespread condemnation on social media. Story was quickly picked up by major media outlets in China and subsequently spread overseas. Provincial and municipal governments were under great pressure from the public

Agenda-setting:

The National Population and Family Planning Commission announced that it would send 10 inspection teams to 19 provinces to review the policy enforcement of local family planning officials

Slaton et al., 2012 [50]

Case study

Timeframe not reported

National family movement has advocated for meaningful engagement of families and youth who are the focus population of the federal Children’s Mental Health Initiative

Health topic: Children’s Mental Health Initiative

Target population: Legislators

Organiser: Children’s mental health family movement

Country: United States of America

Not reported

Format: First person accounts of a family leader’s involvement in legislative policy as a result of her son’s mental health

Characteristics of narratives: Not reported

Strategies that support effective family leadership at making macro-level improvements, such as using data to increase impact of personal stories; asking legislator to make a call on behalf of parents to whatever entity may have created a barrier to care for their child; designing a range of simple ways for parents to directly contact legislators about pending bills; devising ways to funnel information from large numbers of parents into family-run organisation’s public statements; working with the media; working with other groups in a coalition

Policy adoption:

Legislators direct their staff to call family-run organisations to better understand how certain provisions will affect children with mental health needs and their families. Parents have been invited to see legislation they have worked on signed by the governor

Trossman, 1999 [55]

Case study

In January 1999, nurse Karen Daley got infected with HIV and hepatitis C as a result of being stuck bycontaminated needle while performing her job as an emergency room nurse

Health topic: Needle stick legislation

Target population: Legislators and nurses

Organiser: Nurse Karen Daley

Country: United States of America

Not reported

Format: Testimony of nurse Karen Daley, President of Massachusetts Nurses Associations, who is now HIV- and hepatitis C-positive

Characteristics of narratives: Not reported

On April 6, Nurse Daley walked into the Massachusetts State House to present her testimony and let legislators who consider the merits of a proposed needlestick bill to see first-hand that behind every injury, there is a real person. The testimony was covered by press and she has appeared on the public television show “Greater Boston”

Policy adoption:

The day after Daley testified, the Massachusetts health committee put its support behind the bill, allowing it to move forward in the legislative process. The Massachusetts Nurse Association helped draft the language use in the House Bill 969

Umuhoza, 2013 [45]

Case study

In 2009, Rutgers WPF, a Dutch NGO working on sexual and reproductive health and rights supported work on these issues in the global South. A study tour in the Netherlands for six Youth Action Movement (YAM) from Rwanda, Malawi, Mali, Tanzania and Bangladesh was organised. YAM Rwanda’s members decided that their national action plan was going to focus on the issue of safe abortion. Throughout 2010 and 2011, YAM Rwanda took the challenge to improve the situation related to abortion in Rwanda

Health topic: Safe abortion

Target population: Ministries, Parliamentarians, civil society organisations, public

Organiser: Rwandan Youth Action Movement

Country: Rwanda

Not reported

Format: Booklets with testimonies of young women in prison

Characteristics of narratives: One of the testimonies read: “My name is Anne. I am 20 years old… I have been in Karubanda prison since 2007 for committing abortion. I am the 3rd born in the family and the only girl; I was raised by my dad after my mum died when I was still young. I was in the 5th year of my secondary education when a teacher started dating me. I needed school materials and since I could not afford them, I allowed to have sexual intercourse with this teacher at that tender age. With limited knowledge of contraceptive use, I got pregnant and had to drop out of school since it’s against regulations. I decided to have an abortion. I am supposed to serve a period of 9 years of which I have so far completed 3”

Booklets were distributed at different government offices and were also used by Rwandan Youth Action Movement members during strategic and political follow-up events in 2011.

Booklets were complemented by a range of activities to achieve success, including data on extent of unsafe abortion; organised debates; value-clarification exercises; interviews and a survey; launching of a petition for law reform; production of awareness-raising materials; media engagement; and meetings with representatives from government ministries, the national women’s and youth councils, and parliamentarians

Policy adoption:

Activities played a significant role in the advocacy process for amendment of the law, which was revised when the penal code came up for review in June 2012.

Efforts coincided with important policy events, like the revision of Rwanda’s penal code

Wilcock et al., 2013 [47]

Case study

Timeframe not reported

To initiate quality improvements within the NHS Modernisation Agency collaborative programmes that are patient- and carer-focused, it is critical to first identify their needs and concerns

Health topic: Quality improvement in healthcare

Target population: NHS Modernisation Agency collaborative programmes

Organiser: CHD Collaborative and Critical Care Collaborative

Country: United Kingdom

Narrative is described as “a story that tells a sequence of events that are significant to the narrator and his or her audience. Every narrative describes a sequence of events that have happened”

Format: Verbal (narrated) elicited through Discovery Interview Process, a technique for listening to patients and carers and using their narratives to improve care

Characteristics of narratives: Not reported

Patient narratives were gathered by trained interviewers and subsequently analysed by the NHS staff who provide their care. Stories were read out at a national meeting of the Critical Care Programme and the Coronary Heart Disease Collaborative at a plenary session attended by professionals throughout England

Policy implementation:

Narratives led to patient-centred changes as part of a quality improvement project, e.g. in an East London hospital, nurses began to spend time talking with patients who were due to be moved, explaining the reasons and what the patient might expect. Improvements were also made at the pre-assessment phase of an elective patient journey, with introduction of nurses who visit all preoperative patients, identifying particular needs and talking to them about the critical care environment