Campaigning for Healthcare: working and campaigning while ill

Team Members

Stefania Guerra, Jasper van der Kist, Linda Lombi, Aleksi Hulpi, Natalia Sanchez-Querubin

Introduction

Patients, their families and friends employ crowdsourcing platforms in order to raise funds to cover medical and care expenses that stretch beyond their budgets and surpass health insurance coverage. In order to run a campaign a set of standard tools become available to the patient including (for a percentages of the gains) a secure channel for receiving donations, templates to communicate and update donors about a campaign’s progress, and if one visits the Q&A section, also advise on how features and buttons can be best tweaked in order to capture the attention and goodwill of internet users by means of effective updating, uploading, and social media sharing. In fact, the latter is described to be so crucial that campaigners are warned that donors do not browse crowdsourcing platforms, but that instead they encounter individual cases through external media such as news websites and social media sites. Bluntly stated, when translated to healthcare the resources needed to fund life-saving procedures and purchase medicine become dependent on the will and limited recourses of media users, the newsworthiness of the situation, and most dramatically, on the ability of the patient to market him or herself through repetitive digital labour as worthy of the care and compassion of both strangers and acquaintances. Hence the subtitle of our project: ‘working and campaigning while ill.’

Successful stories and the power of new media technologies to harvest solidarity are praised as crowdsourcing has in fact helped patients access economical relief. However, the stories of those that fail to attract the same funds, be featured in the media, and that one could argue have worked less efficiently, are left out and with them a more complete understanding of crowdsourcing for healthcare. Consequently, it becomes necessary to critique the intersection between illness and entrepreneurship that is becoming normalized, that is, we must acknowledge these stories, augment the narratives about crowdfunding for healthcare by making visible the work that is required to gather funds, and consequently demystify the power of crowd as just distributed labour to a labour intensive and competitive enterprise. The need to generate awareness about this subject becomes painfully tangible when one browses the profiles of those that have failed and encounters as a follow-up to a cry for help the question: why is my campaign not working?

As a response to these analytical needs, this project aims to visualize the work and time that are necessary for patients to meet their campaign goal and pay their medical bills, as well as to answer the following question: if one must work while ill, how to do it best? In order to do this a sample of tweets that used the hashtag #cancer during the International Day of Cancer are employed as an initial dataset. Then, a subset of tweets containing URLs that corresponded to GoFundMe.com campaigns ran by or on behalf of cancer patients are filtered and individual profiles are visited. Lastly, their metrics and content are used for further analysis and to produce a series of data visualizations that offer an overview of the substance of these campaign, the average quantity and frequency of clicks, words, update, and images of both successful and unsuccessful campaigns. A comparison is visualized, following the language of the platforms, as recommendations about what works best when campaigning for healthcare.

Research Questions

• How to characterize the work that is required online to provide for one’s own or loved one’s care through crowdfunding?

• How can one identify what works well? That is, which and how should the features and buttons of crowdfunding platforms be employed in order to achieve one’s target?

• And, if one is to work online while sick and resources are limited, how can build a successful campaign?



GoFundMe as a Crowdfunding Platform

The crowdfunding model typically includes by three types of actors:

1. The project starter who proposes the idea and/or project to be funded;

2. Individuals or groups who support the idea (typically by monetary funding);

3. The "platform" that brings the previous two parties together.

Starting with the latter actor, GoFundMe.com as a crowdfunding platform allows people to raise money for certain projects. These projects range from life events such as celebrations and graduations to more poignant circumstances such as accidents and illnesses.

GoFundMe is unique to crowdfunding in that they are not an incentive-based crowdfunding website. Although they do allow projects that are meant to fund other projects for musicians, inventors, etc., the business model is set up to allow for donations to personal causes and life events such as medical bills. using the Wayback Machine provided by the Internet Archive (2015) you can see that the medical category has gained in significance by ranking higher in the ‘most common’ campaigns (see screenshot images below).

GoFundMe gives users a platform to make their own page where they describe their fundraising cause, the amount of money they need, and additional photos or videos. This project can subsequently be shared with people through integrated social network links such as Facebook and Twitter. Once the site is online, people can using the site and track its process. Those who donate can also leave comments. Indeed, for GoFundMe there is a financial interest: it subtracts 8% revenue from each donation its users receive.

Methodology

Because our subject matter is the digital labour of online campaigning, and the large role of GoFundMe ’s integration with social networks like Twitter, we took ‘tweeting’ as our point of departure. Using the Twitter API and an already collected ‘illness’ dataset, we narrowed our data-collection by focusing solely on ‘World Cancer Day’ -- an international awareness day on 4 February for the cancer disease.

Dataset

497.271.531 tweets that use the hashtag #Cancer

Time frame: 2014-11-13 to 2015-07-09

Filter the dataset

• 366.155 Tweets published on the 4 February 2015 are kept for analysis.

Analysis 1. Top Hashtags

• Download the list of top hashtags and the frequency of mention.

• Group them in categories and visualize

• Download co-hashtag network

• Visualize

Analysis 2. Top URLs

• Download the list of all URL tweeted during the International Cancer Day.

• Filter the list using domains of popular crowdsourcing platforms.

• Collect for further analysis all urls from gofund.me

• visit each page individually and capture information for (condition, money requested, money obtained, percentage of success over established goal, number of donors, month of the campaign, geolocation, social media engagement, gender and age of the beneficiary)

• Visualize as overview

Analysis 3. Sub-set of top and low level gofund.me pages.

• Using the percentage of success over established goal the top funded and least funded campaigns were identified.

• additional data is gather for each of them (quantity and type of images, amount of text, comments, social media engagement, author of the profile, frequency of updates..)

• Success and unsuccessful campaigns are compared and a list of recommendation produced.

Findings

1. ‘How to characterize the work that is required online to provide for one’s own or loved one’s care?’

For our first question ‘How to characterize the work that is required online to provide for one’s own or loved one’s care?’

Another striking finding was that women (62,6%) were more represented than men (37,4%) in the GoFundMe campaigns. Furthermore, there was an overrepresentation of adults (76,8%), compared to kids (10,3%) and young individuals (11,6%). Strikingly, the elderly were the smallest group, consisting of a small share of 1,3% in the dataset.

Furthermore, as we expected, we saw a very large role for social media engagement. Both Twitter and Facebook were widely used to ‘spread the word’ about the campaign -- the latter more widely used than the former, perhaps indicating the more ‘personal’ nature of these types of campaigns.

The campaign average of the dataset was 8,6 months. It should be noted that many of the campaigns were exactly 5 months in duration. This was because our dataset was collected on 4 February, and our analysis in Juli, exactly 5 months later. In other words, many of the medical crowdfunding campaigns started on or just before that date.

Our dataset 156 active profiles. The amount of donors 21,333, donating an average amount of $69,95. The total money that was requested was $ 5,630,042. Strikingly, $1,485,931 of that total requested amount is funded by donors. This is only 26,4% of the total amount requested, meaning that crowdfunding for cancer medical bills is not very successful.

Looking further at the success of the campaigns, the numbers indicate that only a very small portion (18, to be exact) reaches their defined goals. Indeed, this small number can be said to be the result of the high amounts of money pledged by the campaigners; medical bills are indeed very expensive.





2. ‘How can one identify what works well?’

Indeed, the crowfunding platform cannot operate by itself. It needs content makers and audience. In other words, a project starter needs to circulate content, make good representation of themselves, and find, engage, and build an audience.

We now turn to our second question, which reads as follows: ‘How can one identify what works well?’ That is, which and how should the features and buttons of crowdsourcing platforms be employed in order to achieve a campaign's target?



Example of GoFundMe Page

Taking into account the tragedy of the topic, we were wondering when we looked at the profiles why it is that one campaign can be successful and the other not. We therefore analysed both the top and the bottom profiles, and made some qualitative and quantitative comparisons.

We found some interesting differences between what we call the ‘winners’ and the ‘losers’ of campaigning for illness, which are summarized in below:

1) Profile Picture

For the winners, the profile picture mostly contains an image with multiple people on it. Compared to the losers who pose mostly alone on the profile pictures. Furthermore, we saw that winners slightly more posed in everyday settings - in the living room or outside, some even in their profession clothes (e.g. veterans or police officers). Whereas the losers posted profile pictures in their medical settings -- e.g. laying in bed or with medical equipment on them.

2) Creator

The person creating the campaign, which is not always the person with the illness himself. It seems that when friends make the campaign, it is more successful than when a direct family member or the patient makes the campaign.

3) Duration (Months)

In terms of months of the campaign we saw averages of 5.4 months for successful campaigns, and 6.1 for unsuccessful ones. We saw a lot of not working links also, which may suggest that when a campaign is over, it is deleted from the website (perhaps pointing to privacy issues).

4) Updates Frequency

The update frequency is how much the campaign posts update messages. Surprisingly this somewhat equal with both the winners and the losers.

5) Donors

Donors are the amount of people who gave money to the campaign. Not surprisingly, this is a lot higher with the winners. But this does not mean that the losers do not have donors -- they still have an average of about 10 donors.

6) Average word count

Average word count with the winners is around 300 words. And interestingly, for the losers, the word count is 100 more (400) -- suggesting that more is not always better.

7) Thankfulness

Average of 4 thank you notes on the pages for both winners and losers.

8) Tweets/Shares

Looking at the tweets and Facebook shares, there is a big difference between the winners and the losers, which indicates that sharing is caring. We also saw that most campaigns were popular at one of the two platforms: For example, a campaign that was popular on twitter was not so popular on facebook.

9) Likes

The GoFundMe website also provides a possibility to ‘like’ campaigns. You see it as a heart on the profile image – and this is ranked on the gofundme website. Indeed, the winners were a lot more popular than the losers.

10) Additional media

Not much used by users.

3. If one is to work online while sick and resources are limited, how to build a successful campaign?

The third question that we explored was: ‘If one is to work online while sick and resources are limited, how to build a successful campaign?’ To answer this research question, we looked at the previous findings and decided to make a list of recommendations for a successful campaign. In other words, we did a more qualitative look at each of the winner/loser campaign profiles, and made a list that is reminiscent to a ‘tips and tricks’ information page for a successful campaigning on GoFundMe.

1) Who should make and run the profile?

It is recommended that you don't do it yourself but rather have a friend and if not possible the mother, wife or husband of the patient. Unsuccessful campaigns are often self-managed.

2) What type of profile picture should I choose?

Profile pictures are definitely an important feature of your campaign, because it is the first thing people will see on the GoFundMe page, but also when you share on facebook or as a tweet. It is recommended that you use a photo in which you are surrounded by your family and/or friends. Also try to represent yourself in an everyday situation, instead of a hospital environment.

3) How many words?

Not too much not too little: it seems like there is a tipping point at around 300 words. Therefore we recommend that your profile should have around 300 words describing the situation, the goals and why people should help. It is good to make it personal by mentioning the patient’s contribution to society and family life. What is he/she like, is he a good parent, what did he/she do for the community, etc. Asking for prayers works well too. In short, be humble and do not sound too greedy as that will turn people away from your campaign.

4) Images?

Add at least 3 images. It’s good to give people an idea about how the person looks like in daily life, and give them a sense of their personality. Also, it is good to include pictures in the updates on the medical process: this keeps people connected to the cause.

5) Updates?

The number of updates is not necessarily relevant, however the content is. Update people on treatment and medical milestones. Important: be thankful, to include an average of 4 thank you messages seems to work well. Do some prayers. Also try to deflect attention from yourself and mention the role of the hospital and care personnel. Again, including pictures makes it more personal and connected.

6) Social media circulation?

Social media is very important. Social media channels help to make your GoFundMe campaign more visible and successful. You should procure that your campaign is shared as much as possible: an average 1444 times and tweeted at least 1207 times seems to work well for your campaign. You can do this by asking your family and friends to share the campaign. And you can evaluate your own success by looking at likes of the GoFundMe website: a good campaign has an average of 150 likes. However, to have a successful campaign it might be useful to go beyond the gofundme.com platform tools. It is as the gofundme website notes: “Keep in mind that donors don't really browse GoFundMe. They'll visit your campaign when it's shared through email, Facebook, Twitter, the local media and any other online community you can share it with.” In other words, a successful campaign is distributed across multiple (social) media channels - visibility is key.

7) What your goal should be

The most anyone has made is 126.000 dollars. However, you are most likely to meet your goals. If you ask for around $15,285 you have a 50% chance of reaching your goal.

Conclusion/Discussion

Our project is located at the intersection of digital labour, self-care work, and compassion. We have studied the GoFundMe crowdfunding platform that helps patients, families, and friends to raise funds for cancer medical bills.

Our study has looked to the amount of work and effort that it takes to that it takes for a patient to meet their campaigning goals: As a sick person you have to ‘work’ for treatment. Indeed, Crowdfunding can be seen as a ‘competition’ to generate public attention and donation. The results of our study point out that it takes a lot of work to work and campaign while ill: (Self-)promotion, compassion, commitment, and sharing are some of the keywords for a successful campaign.

We argue that these findings should be looked at from a critical point of view. By providing a mutual support system for health care, a crowdfunding website such as GoFundMe distribute labour. It seems to create a ‘de-professionalised’ sphere of health-care and may point to a deficiency in health-care systems. In other words, when people are see no other way to work and campaign while ill in order to pay their medical bills, one idea for future research is to see that structural/societal conditions allow/force them do so.