NOW AVAILABLE … the new PCa Social Network PLUS app

Back in February this year we had told you about the development of a new type of social network that would (a) allow men to share information about their prostate cancer with each other and (b) collect that data to evaluate whether such networking improved patients’ quality of life.

So, as of this week, the new PCa Social Network PLUS app is available for download using your mobile phone. About 700 men had originally told us they were interested in this, and if we can get at least half of them to download and start using the app, that would be wonderful!

Here are some basic pieces of information:

  • This is a mobile app that works on one’s mobile phone. It will NOT work from a desktop computer.
  • At present, at this pilot stage, you must be resident in the USA to use the app (but if it gets significant uptake, we plan to make it available more widely as soon as possible)
  • You have a choice about whether to just use the app or whether to use the app and enroll in the quality of life study

However, we would really like to get several hundred men to enroll in the QoL study as well as using the app.

If you want to try out the app for yourself, use your smart phone (Apple- or Android-based) to either click here or just search for “PCa Social Network PLUS” in your app store.

The new PCa Social Network PLUS app is being brought to you by CancerLife in collaboration with Prostate Cancer International. However, we would like to encourage members of any prostate cancer advocacy/support organization to let their members know about this. Prostate Cancer International will not be using this database to solicit funding for our programs. All e-mail and other personal information collected will be privately secured by CancerLife, not by Prostate Cancer International. All data collected as part of the associated qualkity of life study will be de-identified prior to any data analysis or publication of reports.

The associated Quality of Life Study is being conducted by the John Wayne Cancer Institute. This study is now open to enrollment for men using the PCaI Social Network PLUS app, but — as indicated above — you are not required to enroll in this study even if you decide to download and use the app.

Some more detailed background about the PCaI Social Network PLUS app and the associated study is given below.

Additional Background Information

Introducing … the new PCa Social Network PLUS app … and the associated clinical trial of its impact on quality of life for prostate cancer patient

Study Goals

The primary goal of the study is replicate an earlier, similar study conducted at the Memorial Sloan-Kettering Cancer Center (MKSKCC) and confirm that the new PCa Social Network PLUS app can be used to raise quality of life (QoL) for each participant. The original study showed that when patients collected their own data electronically and shared it with their care team, they increase their QoL by 18%!

We believe that by using the PCa Social Nedtwork PLUS app to collect your QoL data as well as by interacting in an online social network, most prostate cancer patients will be able to achieve a positive QoL improvement. We already know that social support within and through online communities can lower depression, reduce anxiety, and have other positive long-term impacts.

Importantly, the PCa Social Support PLUS app allows you to hide and protect your identity inside the community if you wish to do this. Anonymity may well give men the freedom to express their emotions in a safe and judgement-free zone.

What Are We Asking Study Participants to Do?

Basically, we are asking men with prostate cancer who sign up to participate in the study to do five things over at least the first 90 days of the study:

  • Download the PCa Social Network PLUS app from your app store.
    1. This link will take you the right app store based on your phone type (Apple or Android).
  • Register to use the app and join the study (but please remember, you can use the app without joining the QoL study)

    1. By agreeing to the consent form and entering your name for digital signature.
  • Fill out the QoL Fact G Survey (14 questions) as soon as your download the app.
  • Fill out this survey again every 30 days for the next 90 days.
    1. You will be sent reminders asking you to do this
  • Try to Post and Update and share what your struggling with in terms of side effects inside the social network at least 3 times per week!
    1. Ask questions and answer other people’s questions.
    2. Every patient brings his unique experience to this project.
    3. Share your knowledge to whatever extent you can, even if it is as simple as that you have experienced the same issue.

Some Other Important Notes

  • The QoL Fact G Survey has commonly been used in clinical trials in the US. However, as far as we are aware its use has never previously been used with so many prostate cancer patients and (potentially) so many different medications used in treatment of prostate cancer
  • When we feel that we help others, our brains release a neuro-chemical called oxytocin. Even small increases in the levels of oxytocin can make us feel better and can lead to lower levels of anxiety and lower levels of depression.
  • After you have generated 5 to 10 posts yourself, you will be able to generate a Patient’s Summary Report that you can share with your doctor or other members of your “care team”. The report will highlight those things you want your team to focus on. One of the goals of this project is that it should make it easier to communicate your specific concerns to your doctors and your care team.

Please Tell Others About This Project

We strongly encourage you to “tell others” about this project. The more people that we can get to enroll in this project, the bigger the data set we can generate quickly, and the more likely we will be to demonstrate a measurable clinical benefit.

2 Responses

  1. I just downloaded the app and tried to sign up. On the first page I was asked to “…agree to the Terms of Service and Research Study Consent Form.” Like most people, I routinely sign ToS forms I haven’t read, though I would appreciate the opportunity to read it. However, I would be very reluctant to join a study when I cannot see the Consent Form. So I guess I’m out.

  2. Dear Mr. Bell:

    Thank you for this information. We will immediately investigate why you were unable to get to the consent form. Our current belief is that you should have been able to do this without any problem.

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