Apps Aren't Helpful

I found an article in Cure Magazine (if you have cancer and aren't a subscriber, you are missing out) on this 'cool' new app for people living with cancer, called LivingWith. Its supposed to help those of us with cancer in dealing with their disease and its treatment.

'With the number of moving parts associated with a cancer diagnosis and its treatments, patients now have a “one stop shop” to help them navigate their journey.'

An app? Seriously? How can an app do that? I am skeptical to start. First, are you sick and dealing with your cancer and you need to find an app and start using it to communicate with your friends and family. Also, do they want to use an app too? And are they online all the time so they would see requests and updates. 

'The app allows patients to create a tight-knit circle of friends and families to stay connected and easily update loved ones; send requests to people asking for help with daily tasks; track mood, pain and sleep; and keep track of questions or important information for oncology team appointments.

And its all connected to a website. And what does this website do for the patient? Well it can help the caregiver.

Patients, caregivers and health care teams can download the app for free, using the Apple or Google Play stores, or by visiting the This Is Living With Cancer site – which is the main hub for the program designed to share inspirational stories and offer patients and their caregivers an online tool to help.

Oh, and they can send you selected, or their fancy word 'curated' information. This means they are mining the information they send you and then selecting what to send you. 

“They are able to self-identify their tumor type and then start getting some curated information over time,” said Basavaiah. “It is not just for the patients. It is for the whole team around them: the health team, caregivers, their support network.”'

Did you see that the app wants to connect with 'the health team'? Is your oncologist going to sign up to be on the app with you? Do they seriously think medical professionals have time to check on their patients through an app?

I even downloaded the app to try it out. The first thing it wants is for you to connect with other people. So you need to get your friends and family on it before it can help you. 

I did go to their website to see what was on it, other than pushing the app. I went to the Cancer Specific section and selected breast cancer. They only had links to breastcancer.org, American Cancer Society, and Susan B Komen. That wasn't very helpful. It is depending on other sites to provide the information and doesn't seem to 'curate' an yof it. You still need to dig through those sites for information. And it only had information on nine types of cancer.

I also went to the news portion of their site and it had articles on nutrition and coping with cancer treatment - the fun stuff like nausea, getting enough nutrition when you can't keep anything down, etc. But none of the articles I read were very detailed or provided much solid information.

So I tried it. I was on their website. And I can say I would not bother with it at all. Simply not worth the effort. I think that even if you are someone who is online all the time and just diagnosed with cancer, I am not sure it would be that helpful at all. Nothing seemed to be focused to young people with cancer - who are the most likely to be users of an app.

So my rating is one star out of a possible five. I wouldn't suggest recommending it to anyone. 

Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

Social Media Helps Breast Cancer Patients

Here's a surprise for us! Social media helps breast cancer patients.... And it took a research study to tell them that. How many of us went online for support after breast cancer to the online groups at Komen, Breastcancer.org, or many other sites in the last decade? I know I did. I also started blogging and looking for offline support services.

We've know about this for a while now. But it took a bunch of scientists a while to figure this out.

"Women who communicated online the most felt the most positive about their choices about treatment. They also said their decisions were more deliberate, and they were more satisfied with them, according to the study."

And can I add the decisions we made by asking our peers who had been through the same thing were a lot more educated than those of us who went along with what our doctors told us to do because we could hear it from our peers.

"But the findings don't prove that using social media outlets like Facebook and Twitter will benefit all breast cancer patients, and the researchers expressed a note of caution."

However the scientists still have doubts because they need more research. Me, I can tell you that I was happy when I learned to ask questions of my peers. 

""For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care,...""

Okay the internet has changed many things including the practice of medicine and the behavior of patients. Why should this be a surprise? We go online to post pictures of our cats and to ask questions about the decisions facing us as part of our cancer treatments.

Your life online

In this digital era, we all have an online presence. And it will follow us for the rest of our lives. Once something is posted online, its hard to erase it. You can delete it but if anyone has copied it, it is completely out of your hands.

When I first started blogging I was somewhat concerned with privacy and how open I would be about my personal life. Now I am also on Linked In, Facebook, and more online communities that I can remember. The concern if I ever wanted to look for a job and what if they found my blog and how (un)healthy I really am and would never hire me due to the fear that cancer cooties are contagious or that I might drop dead at my desk?

That never happened. I did look for a job at one point and got it and they still don't know all about my health (and I have not dropped dead at my desk) so I think I am safe.

However, I am careful on line. I do not blast my political opinions at everyone on Facebook. I do not spew profanity laced, misspelled tweets. I try to write articulately so I make sense in my blog posts.

Sometimes I wonder about people who do these things ever wonder about the impression they are leaving with outsiders? I am personally turned off by some diatribes online that I unfriend people or leave groups. I do this also if there are too many unprintable words or enough misspellings that warrants a trip back to high school English class.

This morning I found a good example of this where college seniors are being forced to clean their online profiles so they do not impinge on job hopes. The advice given is don't write anything you wouldn't want a parent or employer to see.

Well I don't really do that because I wouldn't be too happy if my boss read my blog post as I like to keep my personal and business lives separate. But I do write with the knowledge that what wouldn't my mother want to see - she reads my blog and follows me on Facebook - so its really true for me. But it does keep me in line and help keep the profanity level low.

Social media for patients

What was I thinking? I volunteered. My husband said volunteer is a synonym for sucker, which sometimes I believe. But I make him volunteer at things anyway. At one organization he is known as the man who 'picks things up and puts them down'.

Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).

As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.

But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.

If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.

Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.

Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?