Authored by: Xinyu Li, Tianqi Liu, Yichen Wang, Bruce Hu, Cheng Shi, Conghan Li, Yuexin Yan, Xuefeng Li, Lixin Cao, Jiayi Shi, Jiale Gao, Wenjia Tu
Project Summary
The lack of health communication about rare diseases has led to public awareness, stereotypes, and stigmatization of people with rare conditions and their corresponding treatments. The voices of people with rare diseases are often drowned out on the internet. Therefore, our group decided to raise public awareness of rare diseases from a health communication perspective.
First, we conducted a literature survey, designed and distributed questionnaires, and interviewed professionals to understand the basic situation of rare diseases. Our interviewees included patients, staff of public welfare organizations, volunteers, etc.
Secondly, based on the preliminary survey, we wrote science articles, posted them publicly, and verified the results by combining objective data and subjective evaluation surveys. Currently, our articles have been viewed by more than 3700 readers.
By publishing the articles, we have raised the awareness of rare diseases for our readers to a certain extent. All human fears stem from the unknown, and it is because of the lack of knowledge that exclusion and discrimination arise, which is the tremendous significance of making more people aware of rare diseases.
We hope to continue to increase our impact on the public in the future.
Choose Project Topic
Topic Description
Health communication refers to a range of activities promoting public health by disseminating information through various channels, such as cell phones and other forms of media. This may involve producing, transmitting, and sharing health-related information using diverse communication methods. The ultimate goal of health communication is to maintain and improve human health by facilitating the flow of relevant health information to individuals and communities.
February 29th marks International Rare Disease Day, dedicated to raising awareness about rare diseases affecting a small population segment. Albinism, acromegaly, idiopathic pulmonary hypertension, phenylketonuria, and mitochondrial disease are some examples of rare diseases. Most of these conditions are genetic, and while some symptoms may not be present at birth, others may affect the patient throughout their life.
According to the China Rare Disease Definition Study Report 2021, a disease that affects fewer than 1/10,000 newborns, has a prevalence of less than 1/10,000, and affects fewer than 140,000 patients, is classified as a rare disease. As of February 2022, there are over 7,000 known rare diseases worldwide, and approximately 30% of children with rare diseases will die before they turn five.
The public perception of rare diseases suffers from stigmatization, resulting in cognitive biases, stereotypes, prejudice, and discrimination. Due to the unique nature of rare diseases, there is generally low public awareness of their incurability and the resulting disability for patients.
The media has a crucial role in disseminating information about rare diseases. Still, unfortunately, they often portray these conditions in a negative light or with sensationalized reports, which can contribute to the stigma surrounding rare disease groups.
At the "2022 China Rare Disease Conference," the China Rare Disease Alliance launched the "Weaknesses are supported; care for rare disease patients" initiative, emphasizing greater awareness and care for patients with rare diseases.
A study on the "de-stigmatization" of rare disease groups from a macro social work perspective found that 37.3% of respondents were afraid and scared of rare diseases, 34% were curious, 5.9% were disgusted, and only 22.8% had an average reaction.
The general public needs to have basic knowledge of the rare disease community. Still, the voices of the rare disease community are often ignored in social media, which can lead to symbolic annihilation and hinder effective disease communication.
The general public needs to have a basic understanding of the rare disease community, but unfortunately, their voices are often ignored in social media. This can lead to "symbolic annihilation," where mass media erases their voices.
However, society has slowly started paying attention to the rare disease community in recent years. Stephenson's Play Theory of Mass Communication suggests audiences often disseminate information for pleasure. Because of the inherent entertainment nature of mass media communication, the rare disease community itself is absent from the media messages about rare diseases.
Take the "Orange Smile Public Welfare Challenge" that swept the Internet in 2018 as an example. Its primary purpose was to make the public understand and pay attention to facioscapulohumeral muscular dystrophy (FSHD) and its patient group.
Unfortunately, the article "Analysis of Health Communication Strategies under the Threshold of the Play Theory of Mass Communication" reveals that out of the top 20 creators who published content on the official institution of rare diseases, only one is a rare disease patient, with the rest of the creators being celebrities.
Significance of the Topic
Ma Xiaowei, director of the National Health and Wellness Commission, said at the 2020 China Rare Disease Summit that according to data from relevant institutions, there are approximately 20 million people with various rare diseases in China. Therefore, preventing and treating rare diseases is crucial to improving the population's overall health and promoting a healthy China.
Currently, the public's exposure to rare diseases is limited to media coverage of individual stories, often labeled as "inspirational," "arduous," or "miraculous." These stories typically follow a similar structure, depicting caring medical professionals who help a rare disease patient after their diagnosis. Many articles, such as "Young boy with rare disease fulfills his dream of Tsinghua" in Xi'an Evening News and "Rare disease boy in a wheelchair attends Guangzhou University" in Guangming.com, highlight the achievements of rare disease patients. These stories provide a glimpse into the world of rare diseases.
However, they also lead to a one-sided and simplistic understanding of the rare disease community, ignoring, drowning out, and erasing the diverse voices and demands of the patients. Most rare disease patients come from ordinary families and do not receive the same media exposure, help, and medical resources as those featured in news reports.
These patients have various needs, including medical, economic, psychological, social, housing, social security, work, and education. They require more than just inspiring stories and practical information.
From the perspective of social support, the limited quantity of social work services has hindered the ability to meet the real needs of the rare disease community. Social support refers to the actions of a specific social network that uses material and spiritual means to help socially disadvantaged people without compensation, mainly through social work.
Social organizations and social workers serving rare disease groups are rarely mentioned in the mass media. However, compared to the large group of rare diseases, the number of social organizations that can assist the rare disease group is minimal. Most rare disease patients have yet to receive services from social workers.
The lack of mass media coverage of rare diseases and related social work has resulted in low public and patient awareness of available social work services. Consequently, professionals are less likely to participate in rare disease services after completing their studies. This profession is often viewed as low-paying and lacking in career prospects, perpetuating a vicious cycle that hinders improving the social support system for rare diseases.
From the perspective of emotional support, individuals with rare diseases and their families require financial, psychological, and spiritual assistance, including opportunities to share their experiences, amplify their voices, seek social help online, and receive acknowledgment and response.
In health communication, emotional support carries significance beyond medical aid: it entails supportive communication that enables patients and their families to alleviate painful emotions and express positive sentiments.
Positive Impact Objectives
In health communication, mass media prioritize covering commonly known illnesses such as cancer, AIDS, heart disease, and daily health care topics, while devoting less attention to rare diseases. This lack of coverage can make accessing the necessary information difficult for people with rare diseases.
To address this issue, we aim to raise awareness about rare diseases by providing information on rare diseases, sharing patients' personal stories, and highlighting social organizations supporting people affected by rare diseases. The goal is to increase public awareness of rare diseases and amplify the voices of those affected.
This involves promoting a greater understanding of rare diseases, including conditions such as Langerhans cell histiocytosis, osteogenesis imperfecta, and facioscapulohumeral muscular dystrophy. We focus on sharing information about the diseases, available treatments and medications, relevant research, and public policies related to rare diseases.
Additionally, we aim to showcase personal stories from people with rare diseases, providing insight into their experiences from diagnosis to treatment and daily life. This section aims to help the public understand the diverse needs of individuals with rare diseases.
Social organizations focusing on rare diseases offer services and welfare projects for groups affected by these conditions. For example, the Koude Rare Disease Center recently organized a painting exhibition and produced microfilm featuring performances by a rare disease group. This section aims to help the public understand the types of services these organizations provide.
We will present information about rare diseases through self-published graphics, share the stories of people with rare diseases through video production, and create HTML5 pages to showcase the work of these social organizations.
In our preliminary survey on rare diseases, we used the targeted survey function of the Questionnaire Star platform to distribute questionnaires nationwide and collected 118 valid responses. Our findings showed that only 4.24% of the respondents were familiar with rare diseases, and only 11.02% reported no difficulty communicating with those with rare diseases. Additionally, 39.83% of the respondents believed that news reports about rare diseases were inaccurate representations of reality.
In light of these results, we aim to raise public awareness of rare diseases by providing information on rare diseases, sharing the experiences of rare disease patients, and collaborating with social workers.
Regarding specific quantitative targets, we aim for our content to increase public understanding of rare diseases to over 15%, promote equal awareness of rare disease groups, and raise public recognition of the accuracy of the information on rare diseases to over 70%.
Following the release of our content, we plan to conduct questionnaires and qualitative interviews with readers and users to establish indicators such as the degree of public knowledge about rare diseases, recognition of the accuracy of the information on rare diseases, and defining the criteria of "equal perception."
Develop Communication Strategy
Identify the Target Audience
Our target audience consists of caring members of society who are concerned about rare diseases. The World Health Organization (WHO) defines rare diseases as those with a prevalence of 0.65‰ to 1‰ of the total population. According to the China Rare Disease Definition Study Report 2021, rare diseases in China have an incidence rate of less than 1/10,000 in newborns, a prevalence rate of less than 1/10,000, and affect fewer than 140,000 patients. As of February 2022, there are over 7,000 known rare diseases worldwide, with China being home to more than 20 million rare disease patients and over 200,000 new patients each year.
Definitions of rare diseases vary by country: in the United States, they affect fewer than 200,000 people; in Japan, fewer than 50,000 people; and in Australia, fewer than 2,000 people. In the United States, the support group for people with rare diseases is known as NORD, a non-profit organization that serves individuals with rare diseases.
Due to the unique characteristics of rare diseases, patients often suffer not only from physical pain and discomfort but also from physical disabilities that make their appearance and language different from those of other people. This can make them vulnerable to discrimination in education, employment, and marriage, leading to negative consequences such as low self-esteem, autism, and difficulties in social integration.
Furthermore, rare diseases cause significant suffering for patients and their families and are often accompanied by stereotypes. Consequently, patients with rare diseases and their families urgently require social, medical, and psychological support.
Identify the Key Message
To promote understanding and support for rare disease patients, we have launched an initiative to increase public awareness. It is essential to recognize that rare diseases can impact anyone, since around 80% of them are genetic and related to congenital disabilities. With each new life, the occurrence of rare diseases is possible, making it relevant to all of us.
We must understand that the fate of those with rare diseases is intertwined with ours, and they are among the most vulnerable members of our society. For instance, those with abnormal scapula development may have difficulty smiling, leading to misunderstandings with those around them. As one mother of a rare disease patient stated, "My child's inability to smile is the most difficult thing I've ever faced."
However, we believe advances in human genetics, precision medicine, and individualized treatment can provide hope and support for rare disease patients. Our goal is to foster more excellent communication and understanding, making rare diseases less rare and promoting the health of all Chinese children.
Media Form and Communication Channel
Our goal of destigmatizing people with rare diseases requires a serious and thought-provoking platform. While entertaining media may have many users, it is unsuitable for our campaign.
A better option is using the WeChat Public Account as a publicity platform that supports publishing text and video content. WeChat has a massive user base, with 1.299 billion monthly active users in mainland China, making it an ideal long-term platform for scientific articles.
However, there is no push function, and the platform does not automatically bring traffic to the public account. To overcome this, we must choose a suitable name that is easy to remember and optimize other platforms to drive traffic to the account.
The lead can be a short video or poster, and we can also use other media for lead generation. Multiple platforms can be used for publication without any limit.
Action Plan and Implementation
Set the Agenda
Phase I: Survey
This phase includes questionnaires, interviews, and literature research.
The survey data were analyzed to understand public perceptions (both reasonable and biased) of rare diseases and rare disease groups.
Semi-standardized telephone interviews were conducted with social organizations, foundation practitioners, and patients.
Literature was collected and analyzed.
Content: Twenty-seven questions were designed to cover several aspects of public perception of rare diseases.
Objective: To understand the level of public awareness of rare diseases and expertise related to rare diseases.
Phase 2: Content Production
Articles and videos are written and edited based on the preliminary survey information.
Content: Includes different types of rare disease science, patients' life stories, and sharing by social organizations engaged in rare disease social work.
The rare diseases covered include Langerhans cell histiocytosis, osteogenesis imperfecta, and facioscapulohumeral muscular dystrophy.
The main content aims to popularize their conditions, treatments, medications, related research, public policies, etc.
Patient life stories refer to interviews with rare disease patients sharing their experiences from diagnosis to treatment and daily life.
Social organizations engaged in rare disease social work share services and public welfare projects done for the rare disease groups, such as the painting exhibition held by Koude Rare Disease Center and the microfilm of rare disease group performance.
Purpose: To let the public understand the basic situation of rare diseases, the diverse needs of rare disease patients, and rare disease social work services.
Phase 3: Content Publication
WeChat Public Account and Today’s Headline Account Creation:
Create the account name, introduction, and theme column.
Purpose: To attract users' attention.
Content Scheduling:
Publish 1-2 theme column articles every week, divided into three sections: Rare Disease Science, Patient Story Sharing, and Social Organization Sharing.
Choose suitable covers, design attractive titles, and select optimal release time slots.
Purpose: To provide users with stable update expectations, improve the reading and dissemination index of the content, let the voice of rare disease groups be heard, draw attention to rare disease issues, and improve understanding.
Video Production:
Shoot and edit science popularization videos on rare diseases.
Choose current affairs hotspots and popular movies and videos to incorporate into the content.
Purpose: To present the plight of rare disease groups more vividly through video images and raise awareness and equal recognition of rare disease initiatives.
Design the Packages
[Communication packages is submitted as urls of articles on the WeChat platform in their native language.]
The Execution Plan
The start date of the first phase was November 20, and the deadline was December 11. The literature review was completed by all group members on November 27, with each member referring to three relevant papers. Based on the basic knowledge of rare diseases, the questionnaire was designed and distributed by Andy, Rita, and Susie, and 118 valid questionnaires were collected on December 11, and the results were analyzed.
Chelsea and Mushycrispy designed the interview outline, and the teachers and patients of the rare disease organization were interviewed on December 4, and the interview data were compiled. The interviewees were rare group acting agents, patients with facioscapulohumeral muscular dystrophy, community program officers of the Kordell Rare Center patient community, foundation practitioners, and Rare Disease Care Program volunteers. Due to the epidemic closure, the interviews were done online, and there was no video recording of the interviewees.
In completing the three components, the team began with a group meeting to establish goals and criteria; after completion, a wrap-up meeting was held to discuss the next steps, each meeting lasted one hour.
The start date for phase two was December 18, with Joey, Chelsea, Carrie, Rita, and Andy writing articles based on the content of the preliminary survey. The deadline for writing was January 15.
The start date for Phase 3 was January 16, with account creation and article posting by Susie, with a deadline of February 22.
Measure Impact
Impact Statistics
We divided the result evaluation into two aspects: subjective and objective. Regarding objective functional indicators, on the public platform, there were five articles with 3,743 reads and an average of 748 reads. Regarding subjective indicators, we conducted an online questionnaire survey with questions such as: Do you know anything about the number and basic definition of rare diseases? Are you aware of three or more rare diseases? Do you know the price range of drugs for rare diseases? Are you willing to help patients through public welfare channels? Are you glad to read more rare disease-related articles? Does the content of the articles reflect the social reality? As a result, we collected feedback from 200 readers and found that 63% of them had accurate basic information about rare diseases after reading the article, 76% of them were willing to participate in public service projects to help patients, and 93% of them thought the report reflected the social reality and were ready to read more related articles. These data support the effectiveness of our actions.
Positive Changes
63% of the readers had an accurate understanding of the basic information about rare diseases after reading the article, 76% were willing to participate in public welfare projects to help patients, and 93% thought the article reflected the social reality and were glad to read more related articles.
Review and Reflections
What Are Successful
"We're all rare disease patients. There are 20 million in the country, but you've probably never seen one. We are afraid to deal with the obstacles of going out and even more afraid to deal with the curious eyes, but the more we don't go out, the less society will change us. So how can we break this circle?" This is a quote from an interview with a rare disease group agent.
Through our preliminary research, we learned about rare diseases such as Huntington's chorea, butterfly baby, porcelain doll, angel, and moon baby and wrote corresponding science articles based on these contents. In addition, we gained valuable experience from the patient's oral accounts.
After we completed the articles based on the survey content and posted them on the web, they were well received by readers and experts. For example, one reader mentioned that all human fears stem from the unknown. Because of not knowing, rejection and discrimination arise, which is the most significant meaning we need to understand rare diseases. We should start with ourselves and then influence people around us to understand rare diseases, pay attention to rare diseases, and help rare disease patients as much as possible.
A total of 200 readers completed the feedback survey at the end, allowing us to assess and confirm the quality of the output results.
What to Improve
Due to the COVID-19 epidemic outbreak during the project, we could not make offline visits to rare disease institutions and shoot videos. Eventually, the expected, planned videos were not presented. In addition, although the team had weekly online meetings to communicate the progress of our work, the inability to meet offline still limited our efficiency.
Summarize Learning
We expanded our horizons in two areas: social research and empathy. We started our project following the scientific research method of topic selection, investigation, hypothesis formulation, research, and analysis.
First, we began with a broad sense of disadvantaged groups to narrow the selection. Then, we chose a topic about rare diseases, based on which we searched and read the literature to gradually establish the selection of health communication.
In conducting the questionnaires and interviews, we learned how to ask questions in the social sciences and used content analysis and coding to summarize the content of the interviews. The keyword throughout the project was "empathy." While skills can be learned, empathy can only be acquired through real encounters.
We learned from professionals and patients that rare diseases are very relevant to us. 80% of rare diseases are genetic diseases caused by congenital disabilities. As long as life is reproducing, rare diseases are possible, and everyone can be a rare disease patient or carrier.
Therefore, protecting "rare life" is the right thing to do.
Comments From the Evaluation Panel
I commend your team for your efforts to raise public awareness of rare diseases through your PIE project. Your literature survey, questionnaires, and interviews with professionals show a comprehensive approach to understanding the basic situation of rare diseases. It is important to include various perspectives in your research, including patients, staff of public welfare organizations, and volunteers, as it provides a more holistic view of the issue at hand.
I am impressed by your team's use of science articles to disseminate information about rare diseases publicly. Your approach of combining objective data and subjective evaluation surveys to verify the results is commendable. It is excellent to know that your articles have been viewed by more than 3700 readers, and you have raised awareness about rare diseases to a certain extent.
Your team's emphasis on the tremendous significance of making more people aware of rare diseases is noteworthy. It is true that many human fears stem from the unknown, and by providing information, you have helped to combat exclusion and discrimination that arise due to lack of knowledge.
Overall, your team's project is an excellent example of how health communication can be used to create a positive impact. Your efforts to raise awareness about rare diseases are highly appreciated, and I hope you will continue to make a positive impact on the public in the future. Well done!
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