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Value of Patient Leader Content

The Value of Patient Leader Content [case study]

Regardless of where patients are in their treatment journeys, whether newly diagnosed or years into their diagnosis, they will most likely research condition-specific resources and information on new treatment options.

More specifically, we found that Patient Leaders within the WEGO Health patient network are actively looking for these resources to share with their communities to help better educate other patients on their diagnoses. Patients, caregivers, and other online community members turn to these Patient Leaders for pertinent patient leader content: information, direction, and advice regarding their own treatment journeys.

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How to Advocate for Mesothelioma Patients

Mesothelioma is a terrible kind of cancer to have. It is aggressive, deadly, and rarely diagnosed in time for treatment to extend life expectancies by very much time. If you know or love someone who is struggling with this illness, or who has passed away because of it, you can be an advocate fighting for the victims of this disease. Individuals with mesothelioma can benefit from advancing research, more awareness, and mesothelioma legal action that brings justice and compensation.

Mesothelioma Patients as Victims

Unlike many other illnesses, most cases of mesothelioma were preventable. The major risk factor for this type of cancer is asbestos exposure. Asbestos is a mineral that is carcinogenic and that has been used extensively in construction materials, shipbuilding, automotive parts, and other applications. Breathing in the fibers of asbestos can lead to a number of serious health conditions, including mesothelioma.

Most people who are suffering because of mesothelioma or who have died from it were exposed to asbestos without realizing it or without realizing that it came with risks. Construction workers, U.S. Navy veterans, shipyard workers, factory workers, miners, plumbers, and many other workers in industries that used asbestos were exposed over the course of their careers. Employers and manufacturers of asbestos materials failed these workers who then became sick.

Advocating for Research and Awareness

Many advocates for mesothelioma patients hope that their work will bring greater awareness to the disease and with it the research that is needed to provide better diagnostic techniques and more effective treatments. There are numerous organizations and groups of people who band together to educate the public about mesothelioma and the risks of asbestos.

These groups bring awareness to the issue, but also raise money for research and advocate for policy changes that will bring funding to research and help protect more people from asbestos exposure. Joining one of these action groups is a great way to get involved and to become a health advocate.

Advocating for Individuals with Mesothelioma

If you know one special person struggling with mesothelioma, such as a parent, an uncle, or a friend, you can advocate for that individual and make a big difference in his or her life. This may mean being part of a support system, going to doctors’ appointments, and fighting for what is best for the patient in terms of treatment and care.

You can also advocate for a patient through financial or legal avenues. Many people with mesothelioma are eligible for compensation, through an asbestos trust fund for instance. Veterans may be eligible for funding through the Veterans Administration. When these avenues are not open to your loved one, there are legal options. Many patients have filed lawsuits against former employers or manufacturers of asbestos-containing materials and won. You can help an individual find a good lawyer and make a case for getting justice and adequate compensation.

Advocating for patients is an important job, especially when those patients are the victims of industries, employers, and manufacturers who exposed people to dangerous materials. Through advocacy groups, political action, fundraising, or just working with an individual, you can make a big difference in the fight against mesothelioma.

Virgil Anderson was recently diagnosed with mesothelioma cancer, which is a cancer caused by exposure to asbestos. One year ago before all this happened, Virgil was very active but now he has become extremely limited in his activities. He is now being treated at the national cancer institute while also spreading awareness of mesothelioma.

Social Tone: Health Networks vs. Standard Communities

One of the things I love best about working at WEGO Health is hearing directly from Health Activists about their motivations for going – and staying – online; essentially, how the internet and social media has changed the lives of both patients and caregivers today.  Generally, we hear that people go online looking for support and information around their diagnosis, or that of a loved one, and that for the most part, they find both support and information within that online community and that the majority of experiences within the online community are positive.  As a Health Activist yourself, I’m sure you know that this is a major factor in wanting to stay active and engaged within the online community.

 

But let’s get real, it’s not all rainbows and sunshine; sometimes you have community members who are negative, disruptive, or even downright mean.

 

The Pew Internet & American Life Project (if you’re not familiar with Pew, you should definitely check them out – great resource for internet-related research) recently released a new study on ‘The tone of life on social networking sites’ and it got me thinking about what Health Activists see every day as well as what we see in our own community here at WEGO Health.  The top line findings from Pew’s report were in line with what my gut tells me about health communities online (“social networking sites” or SNS):

 

  • 85% of SNS-using adults say that their experience on the sites is that people are mostly kind
  • 49% of SNS-using adults said that they have seen mean or cruel behavior displayed by others at least occasionally
  • 13% of SNS-using adults say yes to “has someone been mean or cruel to you personally”

 

But, what I found really interesting was some of the information that came from downloading the full text of both questions and answers related to this study.  Pew did a great job in probing participants about what actually happens within the community when there is negative, mean, or cruel behavior.  A few more data points for you:

 

 

Frequently Sometimes Once in awhile Never Don’t Know Refuse
When people on social networking sites are being mean or offensive, how often, if ever, do others… defend the person or group who is being harassed or insulted? 22% 32% 23% 15% 7% 1%
When people on social networking sites are being mean or offensive, how often, if ever, do others… tell the person to stop? 21% 27% 24% 22% 6% 1%
When people on social networking sites are being mean or offensive, how often, if ever, do others… join in the mean or offensive behavior? 10% 26% 31% 28% 5% 0%
When people on social networking sites are being mean or offensive, how often, if ever, do others… just ignore the behavior? 45% 28% 13% 8% 6% 1%

 

Based on these Pew findings, there is a fair amount of negative or mean behavior that goes unaddressed by the community at large.  Having had my own experiences within social networks, I don’t find this hard to believe but when I think about health communities specifically, I’m less sure.  Based on what I’ve seen of both Health Activists and community members, health networks are “safer” than the standard social network and most members are welcoming and accepting, but also that community members are more likely to call others out when they’re acting inappropriately.

 

Pew focused on all social networking sites but it would be interesting to see how health sites compare.

 

What has your experience been within your own communities?


 

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