Ready for some shhmoozing? How technology can help with your cancer recovery
Michelle Gallen turned to technology to aid in her recovery from encephalitis
In recent years, social networking services and the ever-changing digital technology landscape have affected many sectors of the global healthcare industry. Patients are using social networks to learn more about their health conditions and seek treatment information. Social networking allows medical professionals, researchers and advocates to crowdsource research and facilitate data collection, and at the same time we are seeing a growth in health technology tools to help manage and track medical conditions.
But long before these technology advances, what did we do for information and support? Someone who set out to leverage the health technology revolution in its early days is Michelle Gallen. I read a fascinating interview with Michelle in yesterday’s Irish Times Health, in which she spoke of how she used technology to overcome the devastating effects of encephalitis – a rare brain illness. As this is the very illness my own mother was diagnosed with in March this year and witnessing the very slow progress of Mum’s recovery, I was fascinated to read how Michelle turned to technology to deal with the cognitive deficits caused by this illness.
Nowadays, the internet is full of information on the illness, support, recovery. But in 1999 there was no Wikipedia, YouTube, Twitter or Facebook. It was difficult to find information on encephalitis, and hard to stay in touch with friends using a 56k modem and a dial-up connection. But even in those early days, I knew the internet could help my damaged brain. It held facts and figures I had lost, stored information I could no longer remember. Without my laptop, I felt damaged and vulnerable. With it, I could scrabble for normalcy. And so my huge debt to technology began.
Apart from my interest in Michelle’s story because of what we are dealing with as a family with my mother, I also thought of it in relation to my own struggles with cognitive impairment aka “chemo brain” after going 6 rounds with chemotherapy. I don’t care how many studies I read on the subject saying that chemo brain doesn’t exist, I know it does. That fuzzy headed, forgetfulness which occurs after chemotherapy, or while on hormonal treatment can be quite distressing as you try to pick up the pieces of your life and move on after breast cancer treatment. When I returned to work, I found it stressful and embarrassing not to be able to finish my train of thought in a meeting or on the telephone.
I still struggle today, having trouble remembering people’s names and some memory lapses – not a good look for someone whose job involves attending conferences and meetings, giving presentations and dealing with the public. That is why I love the concept of Shhmooze, co-founded by Michelle last year. It’s a smartphone app that uses location-based technology to help you connect with the professionals around you – ideal for attending events or conference. Michelle says that ” it’s a godsend for someone with a brain injury, who struggles to remember faces and names and can’t deal with large crowds.” Sound familiar???
I was really inspired by Michelle’s story and her attitude towards taking an active role in her recovery, and of course, as you know, if a story of recovery touches on digital media I am in my element!
Michelle concludes the Irish Times interview with these words which resonate so much with me:
Technology saved and changed my life. I believe we can all use it to change and save our country, our world. If we’re hungry enough, if we’re desperate enough, we’ll grab what’s there, and we’ll use it to make things better, to fix things, to help not just ourselves, but the people around us.
Have you turned to technology to aid your recovery from cancer or any other illness? Have you ever downloaded any medical apps? We would love to hear more about your experiences. And if you have questions you would like to ask Michelle, she has kindly agreed to drop by the blog and answer them for you.
Find out more about Shhmooze and download the app at http://shhmooze.com/
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What a great post! I am fascinated by the potential of health technology tools so I found it very interesting to hear how Michelle utiilised the power of digital technology in her recovery.
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This is such a huge and ever-expanding area but it was certainly interesting to read Michelle’s story and to hear ow she harnessed the internet in her recovery.
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Fascinating subject – the potential for Health 2.0 is endless!
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I use the internet to stay informed of the latest cancer developments because i believe that knowledge is power and being an informed patient can save your life.
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My concern is with the quality of information you get online – you need to be sure of where you are getting your infomation!
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As a health professional I’ve seen a huge increase in patients seeking information on online health sites over the past five years, and I would have a concern about some of the information they are seeking. Having said that, in the majority of cases the information they are accessing is actually quite accurate
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I don’t think that online health networks can or should ever substitute for the doctor-patient relationship but it is nevertheless extremely valuable in providing support and additional information
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People have been talking to each other in hospital and doctor waiting rooms since the beginning of medicine. That conversation has just moved online. Now they’re talking to each other online and becoming more informed and empowered as a result.
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Loved this post. When patients have more information, they can partner more effectively with their doctors and take greater ownership of their health and healthcare.
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As someone who, like you, has to attend frequent meetings, etc. and suffers from chemo brain I am very interested in downloading the shhmooze app – thanks for letting us know about it.
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Shhmooze – what a clever name and what a great idea!
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What a fantastic story! I so admire Michelle and the active role she took in her recovery and where it led for me. Continued health and success to you Michelle.
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Ah my favorite topic – the power of social media to connect, educate and support patients! Loved reading Michelle’s story and hearing about the app that she has developed – sounds very useful – must check it out.
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The opportunity to share resources, advice, and encouragement is something that can be incredibly empowering for a cancer patient and so anything that facilitates this is to be welcomed
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So sorry to hear of your mum’s illness Marie
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Sounds really interesting and I love to see ideas born out of someone’s personal experience that then go on to help so many other people. If one person needs it then it is likely that many more could use it. I do think social media and technology have changed so many things in our lives, obviously, and it will be interesting to see how things progress from here. Sending some warm wishes to your Mum and you. x
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The internet became my lifeline the very day I started the diagnostic process. The information I collected helped me feel less out of control as cancer swirled around me. Since my mastectomy, I’ve also come to rely on the internet for sharing support with other survivors. So much so, that I created my website, WhereWeGoNow.com. Reaching out to others has brought me full circle in the internet and is pivotal to my continued emotional healing.
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What an interesting post, Marie. Technology is an amazing tool in all areas of life now, so it’s no surprise how it is becoming more intricately involved in the health realm of our lives as well. For me personally, the internet and social media have been a God-send. I can’t imagine going through cancer without them. They are literally life-lines for me. It sounds like this particular ap is a great idea. Like someone else mentioned, if one person finds it helpful, you can be pretty sure more will as well. I’m sorry your mom’s recovery is progressing so slowly, Marie, but I’m glad to hear she is improving. My best. Oh, and the chemo brain thing, I agree, it exists.
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I think there’s great potential for digital support during illness, but only if the intent and defaults are carefully designed. Privacy is also an issue, but everyone has different levels of what they want to share. As long as there’s transparency about the level of privacy afforded to people, it’s reasonable though I favor higher standard than currently exist.
The app sounds possibly very useful. Recent debate is popping up on FDA guidance on medical apps, so I’d be interested to hear/see what Schmooze’s take is on those regulations.
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I agree that social media in various forms is growing in importance for patients, caregivers, and physicians alike. For patients and caregivers, there is so much information, now readily available, that you can get almost instant 2nd, 3rd, 4th opinions without even leaving your home! The on-line support community is growing as well, and I think will increase in importance especially for some less common medical conditions. As more physicians are developing an on-line presence, patients and physicians now have the ability to interact with each other in a way the exam room does not generally permit, which leads to more sharing of information, and more understanding from all involved.
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Thanks for highlighting my article Marie, and to your readers for such interesting (and kind) comments. I just wanted to make a few observations off the top of my head:
Worse than no information is the wrong information. There is a wealth of health information on the Internet. Finding accurate, up-to-date and reliable information can seem daunting. I’m in the NHS, which means that for any doctor or hospital appointment I have, my first port of call is http://www.nhsdirect.nhs.uk/ – this site provides good basic information on illnesses etc. What’s great is that you can go to your appointment informed about what the NHS position is on your disease/illness. It gives you an excellent starting point. Unfortunately I don’t think there is an Irish equivalent.
Different healthcare systems provide very different treatments and levels of help. I felt abandoned within the NHS in the early days of my illness. However, the care and treatment I received later on in Dublin was amazing. I’m very lucky to have experienced both systems. Even within the NHS, in my personal experience I’ve found a distinct difference between the quality of treatment in London and that in Belfast. But no matter what the system – I’ve found the patient has to work very hard to get the best possible treatment.
When researching topics on the Internet, the very human instinct is to search for information that backs up what you already know, or what you want to believe. I think it’s always really important to try and keep an impartial, open but critical mindset when doing health research, and challenge your own assumptions or beliefs.
mHealth is a booming market at the moment – hundreds of millions of dollars are being invested in hardware, software and apps that will change how us ordinary folk monitor and report on our health. However, we need an engaged and joined-up health service to maximise the benefits from this technology boom. This will take a long time to evolve, and will do so in response to our demand, as well as evangelists within the healthcare services and industry.
I’d hate to be a GP right now. I can only imagine how frustrating it might be to be faced daily by patients with print-outs from Google challenging my years of experience and training. I think we need to have a very even handed approach to both challenging the healthcare we might receive, and appreciating the amazing work of the healthcare providers we meet.
Finally (as mentioned on Twitter earlier today) no matter what technology you have at your fingertips, the key to the best recovery possible for you begins with ‘fighting spirit’ – and becoming an empowered patient.
Thanks again Marie for such an interesting post and discussion! Good luck to you and your mother in your own health journeys.
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Marie,
I’m glad to hear your mum is progressing; sorry it has been slow.
One of the few blessings in the intersection of cancer and technology has been meeting you and the others, Marie. I would likely still be in the same place physically, but spiritually it has been amazingly healing.
Katie
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“Schmooze!” Love it!
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As a breast cancer survivor and coach to cancer survivors, technology has helped me in 3 ways:
1. personally I subscribe and stay on top of the scientific research for breast cancer.
2. it allows me to e-mail my doctors and get a quick response without the need to wait for an appointment
3. Professionally – it allows me to communicate with my client and spread my message in a much bigger way.
The danger I see is people participating in support groups on-line and either getting bad advice or being affected emotionally in a way that is not healthy for them. I hear from psychiatrists that cancer survivors call them in the middle of the night because someone said something on a forum.
The best information concerning your health comes from top notch medical team, your own research of science and it being filtered through your doctors.
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Thanks for your input everyone and to those who sounded a word of caution on misinformation and on getting too involved in online health networking – important points and thanks for raising them. Since I tweeted this earlier today, I have been contacted by John Novack of Inspire.com (online patient support communities) who pointed me in the direction of an article by Wendy Station of Encephalitis Global group http://t.co/a35nulN. I was also alerted to the existence of encephalitis.info and want to pass on that information too. This is the very definition of the power of social media for health in action!
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It is important to avoid misinformation, and that is a real danger with digital media. But I believe the benefits far outweigh the risks. I turned to the internet when I was diagnosed with lymphedema in 1997. With no in-person support group available (even in a major metro area), I knew I needed to find an online group to help me cope with this relatively rare condition. I resorted to a discussion group sponsored by ACOR (Association of Cancer Online Resources; http://www.acor.org). Since then, most of we remaining lymphedema members have joined Facebook to continue updates about our lives. I haven’t had the need yet to download any medical apps, but I will definitely look into that now that I’ve heard of the benefits. Chemobrain is definitely not an imagined condition, and can be permanent.
I have a question for Michelle: Which of all the social networking and digital media did you find most beneficial to your recovery from your illness?
Thanks so much for this essential information.
Jan
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Please visit http://www.encephalitis.info for more information on Encephalitis and access to our support and information services
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This is an excellent posting! When I was going through breast cancer diagnosis and treatment, there wasn’t a lot of social media going on. I could’ve used the wonderful blogger friends I’ve made through social media.
That Schmooze program might work for us chemobrainers, too!
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What a great post indeed and I loved reading everyone’s thoughtful comments which really added to the discussion.
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When I saw words like Web 2.0, crowdsourcing and so forth, I thought this post wasn’t for me, but when I persisted and read on, I see that a lot of this stuff I am already doing through social networking..but I didn’t know it was called those fancy terms..I feel very clever now 🙂
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Good post and comments. Good luck !
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