Lung Leavin’ Day

Interview With Cameron Von St James, husband of Heather Von St James, survivor advocate for the Mesothelioma Cancer Alliance and founder of Lung Leavin’ Day

Cameron and Heather Von St James with their daughter

Cameron and Heather Von St James with their daughter

Kara:

Describe what Lung Leavin’ Day means to you.

Cameron:

Lung Leavin’ Day is a special holiday for my family. It is a time where friends, family, and mesothelioma community members can all gather at our home- and connect and share our fears and overcome them together.

Kara:

Why did you decide to create this “holiday”?

Cameron:

Lung Leavin’ Day is a tradition that my family started after my wife Heather was about to undergo a highly invasive and risky surgery as treatment for her mesothelioma cancer. Mesothelioma is a cancer, known to be caused by exposure to asbestos. Taking from the tradition of firewalking- we write our fears on a plate and smash them into a fire. The day is about celebrating overcoming fear, feeling a sense of strength and hope when you need it most, and celebrating Heather’s survival!

Kara:

When your wife was first diagnosed, how did you offer her support?

Cameron:

When Heather was first diagnosed, we were both in a state of shock, and confusion. Wasn’t this a disease that old men got? How could she only have 15 months to live? She is a young and seemingly healthy woman. After Heather’s treatment, I unfortunately had to return to work in order to support our family. So Heather stayed with her parents in South Dakota, while I was in Minnesota working. That was a hard time on us because I had to be a caregiver from a distance. I couldn’t see her everyday, and that was really hard.

Kara:

What do you think are ways caregivers can help cancer patients feel more confident and empowered?

Cameron:

Focusing on the things that you can control is really important. During a patient’s cancer experience they may feel helpless, like there is nothing they can do that is within their power. That is not true, and as a caregiver to be able to contribute positively to their sense of confidence can play a huge role in helping them maintain a positive mental attitude. Showing personal strength and fortitude during adverse times can be contagious, and reminding them that they are loved, and appreciated regardless of their cancer experience.

Kara:

What have you learned from this experience?

Cameron:

That anyone can have mesothelioma. The disease is commonly thought of as an “old man” disease. But there are many people out there like Heather, who were exposed as a child. Heather would wear her father’s work jacket as a young girl to do outside chores, and unknowingly, that jacket was covered in asbestos fibers. There are 60 countries around the world that have banned asbestos, and the U.S. and Canada have not. Anyone could be at risk until there is a global ban on asbestos.

Kara:

What advice would you give to other caregivers whose loved ones have been diagnosed with cancer?

Cameron:

As caregiver, it is really easy to neglect yourself. Don’t neglect your own social and physically wellbeing. If you yourself are not 10 years FBready to fight this, then you have nothing that you can give to the fight. Actively remind yourself to take time for you. Caregivers need care too. Stay organized. Their cancer experience is going to become yours to bear as well, so you have to learn to balance their treatment, symptoms, appointments, and all of that with your own life. When people ask how they can help, if you are organized, you will have specific things that they can help with. Give them the opportunity to be involved in a productive way.

Kara:

What were your thoughts when your wife’s doctor recommended an experimental procedure?

Cameron:

Heather and I were presented with three treatment options based on her diagnosis. If we chose to do nothing, she was expected to live 15 months. If she chose the route of chemotherapy and radiation treatment, she was expected live for 5 years. But there was a third option. It was clearly the riskiest, but it had the potential for her to survive this. The treatment involved a surgical procedure called an Extrapleural Pneumonectomy with Dr. David Sugarbaker at the Brigham and Women’s Hospital in Boston. The surgery involves removing her left lung, pericardium, diaphragm and pleura. There really wasn’t much of a choice between the 3 options, we had a newborn at home, Heather and I knew we needed to get to Boston, and beat this cancer.

Kara:

Did you ever seek a second opinion?

Cameron:

Luckily Heather’s doctor never wrote off her symptoms as something postpartum, and really listened to her concerns. She was referred to Dr. Sugarbaker, a world-renowned thoracic surgeon. We knew we were in the hands of the best care possible. Heather continues to see Dr. Sugarbaker every 6 months today.

Kara:

What do you hope will come from spreading awareness about Lung Leavin’ Day?

Cameron:

We want to provide hope to those going through something similar in their life. Everyone has a battle to fight, and Heather and I want people to know that you are not alone, and you shouldn’t be ashamed or paralyzed by your fear. Once you acknowledge them- whether it is writing them down, or sharing them with someone, you are one step closer to overcoming them.

Designing With The Patient in Mind

Incorporating patient values, preferences and needs into digital health interventions.

“We are stuck with technology when what we really want is just stuff that works.” Douglas Adams, The Hitchhikers Guide To The Galaxy.

A new report by Accenture [1]reveals that just two percent of patients at hospitals are using health apps provided for them. The research, which assessed mobile app use among the 100 largest U.S. hospitals, found that 66 percent of the hospitals have mobile apps for consumers and 38 percent of that subset have developed proprietary apps for their patients. However, a mere two percent of patients at those hospitals are using apps provided to them. This staggeringly low figure represents an alarming waste of resources in the healthcare industry.

Accenture found that “hospital apps are failing to engage patients by not aligning their functionality and user experience with what consumers expect and need.” For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. Brian Kalis, managing director of the health practice at Accenture, recommends that hospitals “must adopt a more patient-centric approach when developing new mobile health apps, or when revamping existing mobile apps.”

Respondents to a 2013 pilot study of 250 patient and consumer groups worldwide specified five main requirements of mobile health applications:

  1. Give people more control over their condition, or keep them healthy
  2. Be easy to use
  3. Be capable of being used regularly
  4. Allow networking with other people like them
  5. Be trustworthy

Whilst all patients rated these five specificities as important, the degree of importance varied. For instance, those with a long-term chronic condition, such as diabetes, specified that their top priority for a health app is to help them manage their condition; while people with a condition that affects personal mobility, such as a rheumatological condition, placed ease of use as a top priority for their apps.

As I wrote in a previous article, app developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes. The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives.  If an application does not solve a real problem for the patient it will not be adopted.

The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.” Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly?‘ If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

Craig Scherer, cofounder and senior partner of Insight Product Development, a design innovation consultancy that specializes in medical devices, consumer healthcare, and drug-delivery systems recommends an a design-approach which:

  • Understands the ergonomics and the physical experiences of how the device will be used
  • Curates the information that is most relevant to the user
  • Puts the device in the context of an user’s environment and lifestyle

Ergonomics concerns physical comfort and ease of use; curation means making the most importation information visible first; and finally, it’s important to understand how the device will work in the patient’s own environment. Developers must consider all aspects of the user’s interaction, not just the product itself. Adrian James, co-founder of Omada Health, a digital health company that designed a 16-week diabetes prevention program, recognised early on that one of the first steps in creating the company was getting user feedback – even before there was a product. “We’d walk with people through their homes,” James explained, “we’d hear their story, and then we’d put this concept in their hands and just let them tell us about what it was.”

Build It And They Will Come

An oft-repeated pattern reflects the pervasive notion that if we simply build a solution the “right way,” patients will embrace it. Not so. Dameyon Bonson, a national advisor on suicide prevention in Australia, is currently leading up a Movember funded research project using digital interventions to help men take action on mental health. He firmly believes “that there has been a rush to be ‘first’ to develop mobile health, taking the minimal viable product (MVP) approach a little too literally. MVP doesn’t mean serving up anything quickly; a lot of these mobile applications seem to have then been made ‘in a rush’. Evidence, and I mean good evidence, needs to support the development and I don’t think that (evidence) actually exists just yet. Simply automating what currently exists into mobile application, in my opinion is fraught with failure, and costly. Very costly. We are talking about the merging of two completely different worlds, mental health and technology.”

An app must seamlessly integrate into a user’s lifestyle to be accepted and well used; it needs to fulfill some kind of utility that is integral to our daily lives. It must also engage the end user. Dr Mitesh Patel and colleagues have recently argued that “the successful use and potential health benefits related to these devices depend more on the design of the engagement strategies than on the features of their technology.” Stanford behavioral health expert Stephanie Habif believes that emotional resonance is an important factor in designing successful health applications. “It’s not just enough to infect the brain and implant the knowledge”, she said, “You have to stir up the desire engine. You have to tap into emotion.”

Health Does Not Happen In A Silo

The most successful health applications understand the real problems that come with living with a disease or condition, and offer something that genuinely helps. A failure to recognize the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted digital health initiatives. It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to the development and adoption of innovative therapies and clinical solutions that truly meet patients’ needs. After all, to quote Darla Brown – a cancer patient who co-created digital health company Intake.Me – in a Stanford MedicineX session on patients as entrepreneurs, “who knows better than the patient what will have the most impact on their ability to get and stay well?” Co-panellist, Michael Seres, a digital health entrepreneur and founder of 11Health, a connected medical device company, describes himself as a “digital entrepreneur by accident and necessity.” “I was in hospital post [bowel] transplant with a stoma [a surgically created opening from an area inside the body to the outside] that leaked and healthcare professionals asking me to measure output. I just assumed there was a solution, so I did what I assumed everyone would do. I asked other patients. Let’s face it the greatest under-utilized resource in healthcare is patients. We usually have a solution for a practical problem. One thing is certain; we understand the end user needs. 20,000 patients online told me that there was no real solution to my problems so I built one. I had one big advantage, I understood what I needed. It always amazes me that in healthcare we spend millions building solutions that the end users don’t want. Why? Well often we are never asked. Would Amazon build a platform without consulting the end user? Would GM produce a new car without understanding their consumer? So why do we do it in healthcare? At every step I consulted patients and healthcare professionals as to whether it made sense. It just seemed obvious to me to do it this way.”

We have now entered an age in which the digital world will revolutionise health care, much as it has done in other industries. Yet while digital technology is poised to transform healthcare, its full potential will never be realized unless stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user. To quote the late Jessie Gruman, founder of the Center for Advancing Health, in an open letter to mobile health developers, “While I can’t promise you that consultation with us is the magic key to successful, well-used apps, I can tell you that without it, your app doesn’t stand a chance.”


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Resource Links

[1] Accenture 

[2]

Live Your Life, Every Day

At the Prostate Cancer Town Meeting, William Baun, wellness expert and prostate cancer patient advocate, talks about his journey from diagnosis through treatment, clinical trials and living and coping with his illness. Even with a family history of prostate cancer, William was still surprised when he received his diagnosis because it was much earlier than his grandfather or dad. After the initial shocked lessened, he decided he knew what to do and that he was going to fight hard and make the best day out of everyday. William’s advice for other cancer patients is to make sure you take care of yourself and your caregiver. Watch the video below to hear William’s full story.

Live Your Life, Every Day from Patient Empowerment Network on Vimeo.

Persevering Through Clinical Trials

Andrew Schorr talks with patient advocate, Voncille “Peppe” Fryou about her journey with cancer and clinical trials. She begins by explaining that after 10 years without an accurate diagnosis, Peppe finally found out why she was tired all the time…Primary Myelofibrosis (PMF). To beat this disease, she has been enrolled in four different clinical trials, and is now currently participating in the PRM-151 trial. One thing she has learned from her experience is that patients need to be active participants in their studies. Watch the video below for Peppe’s full story and advice on clinical trials.

Persevering Through Clinical Trials from Patient Empowerment Network on Vimeo.


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Andrew:    

Peppe, you’re from where in Louisiana?

Peppe:    

Lafayette, Louisiana, which is on the Gulf Coast.

Andrew:     

And you were diagnosed with primary myelofibrosis just like me right off the bat.

Peppe:

Um-hmm.

Andrew:     

How did it present itself?

Peppe:   

I was tired all the time. For years and years, I was tired. And we did all sorts of tests, and they would come back negative. The only thing they ever came back with was Epstein Barr virus, which they said I had chronic fatigue syndrome.

Andrew:  

So you went how many years before you got an accurate diagnosis?

Peppe:  

Let’s see, probably 10 years.

Andrew:

So it can happen. So you have this diagnosis, and you were very sick.

Peppe:

Yeah.

Andrew:

You eventually got over here to MD Anderson, Dr. Verstovsek. And you’ve been in a number of clinical trials.

Peppe:

Yes.

Andrew:

And you’ve had highs and lows with those. It’s not always been perfect at all.

Peppe:

Exactly. Sometimes, particularly me, I started off well, but didn’t end out very well. I sort of started off good, and then I just started going downhill. And so Dr. V says we’re going to try something else. We’re going to try something else. Are you for that? Yeah. We made a pact. He said as long as he’s being a doctor that I have to stay here and be his patient. So I stayed on his butt all the time. You got to keep me alive, doc. Get busy. And he did.

Andrew:

So you’re on one of these trials we mentioned, the PRM-151 trial.

Peppe:     

Yes.

Andrew:  

What does that involve?

Peppe:     

I get an IV. I go through my clinicals. I get an IV. And I go home. No side effects, nothing.

Andrew: 

Is this an infused medicine?

Peppe:  

Yes. Several years ago, I had a port put in because of some of the medications that would make my counts drop. I needed blood transfusions. And the vein thing got old real fast because it was years I needed the transfusions. So I had a port put in. The doctor did a botched job with that. I had another port put in. He did a terrible job with that. So I came to MD Anderson and said put me a port in. And now, I have an excellent port, and everything works fine. And it’s just hook me up, and –

Andrew:    

One last thing is so you’ve had quite an adventure with myelofibrosis. What’s your view of today and the future right now?

Peppe:     

Oh, we’ve come so far. I mean, like I said, this is my fourth study. Plus, I was on the medication Jakafi. It really wasn’t – he may disagree with me. It really wasn’t a good drug for me. And I put on 50 pounds. And I’m just too little for that. But I’ve gotten that weight off. But I think that it’s important that patients stay active in the studies. I’ll tell you why I agreed to team up with Dr. V. I had a friend years ago that had Hep C. And she got in on a study someplace in New Orleans, Tulane or some place. And she stayed on that study through hell and back. She fell asleep at her desk. But if she missed days of work, they were going to back off on her medication. And her best survival rate was taking it full force. So she did it. She did it. She’s still alive today. And so that’s my hope and my dream for all of us is that our experts are going to find what it is that we need to be cured or control it.

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Healing vs. Curing

Healing vs. Curing from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.

Combatting Cochexia and Appetite Changes

Combatting Cochexia and Appetite Changes from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss ways to combat cochexia and appetite changes during cancer treatment.

Symptoms of Lung Cancer

Symptoms of Lung Cancer from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss two of the most prominent symptoms of lung cancer, shortness of breath and anxiety. There are great drugs and energy conservation techniques to combat the cycle of those two symptoms.

The Patient Experience

The Patient Experience from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the patient experience. The key to treatment is how to manage both the symptoms and side effects of cancer treatments.

Supportive vs. Palliative Care

Supportive vs. Palliative Care from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the definitions and differences of supportive and palliative care, and what it means to them

The Emotional Side of Cancer

The Emotional Side of Cancer from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the emotional side of cancer and how symptom and comfort management should be apart of your treatment from the beginning.

Communicating With Your Healthcare Team

Communicating With Your Healthcare Team from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the importance of communicating with your healthcare team. They agree in having a life planning conversation while you’re healthy is one of the best things you can do.

Edward Leigh’s 366 Top Tips

After a decade of work and personal experiences, Ed created the educational tool – Engaging Your Patients 2016 Calendar. In this calendar, there is a tip-a-day to connect, interview and educate patients in the hopes of improving patient satisfaction and safety. As a two-time cancer survivor, Ed has seen healthcare from both the patient and healthcare professional perspective. The calendar covers a multitude of topics including empathy, interviewing, and service excellence, among many others.

To highlight this perfect tabletop resource, we will be posting a tip a week via social media.

You can order your own calendar here.

Social Media in Hematology

Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.


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Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

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Are We Ready for Mobile Health?

Are we ready for mHealth in 2016?

Mobile health, also called mHealth, is a term used for the practice of medicine and public health supported by mobile devices. It is a growing industry fuelled by the rise in ownership of personal mobile devices. A new national survey shows that more than eighty percent of US residents between the ages of 18 and 49 currently own an app-enabled mobile phone. Fifteen percent of the population have purchased wearable devices that connect to their phones adding functionality such as tracking capabilities. These devices worn on the body or incorporated into garments and accessories such as wristbands and watches, have given rise to a development known as the “quantified self” movement. By routinely tracking everyday behaviors, such as sleeping patterns and activity levels, wearables aim to move individuals closer to better health habits. According to the International Data Corporation Worldwide Quarterly Wearable Device Tracker, wearable device shipments reached 76.1 million units in 2015, up 163.6% from the 28.9 million units shipped in 2014.  But beyond the hype of the industry’s claims about the scale of wearable technology, how ready are we to use them in a clinical setting?

In spite of all the buzz and excitement, the reality is that the industry is still at the early stages of development and adoption. Many doctors question the clinical value of activity trackers and struggle to know what to do with the deluge of data wearables produce. Recording individual numbers is of little value when there is no system to extract meaning from it and show how it all works together. In an online survey conducted in September 2015  just 5% of respondents indicated that their organizations were “very prepared” to develop patient insight from emerging data sources like wearables. Nearly a quarter indicated their organizations were “very unprepared” and nearly half called their organizations “unprepared.”

Providers have concerns about reliability, interoperability and reimbursement. Research conducted at UCSF Center for Digital Health Innovation compared the data reported by consumer wearable devices to relevant clinical gold standards in multiple studies over the past two years. It found that very few devices currently on the market perform with the reliability of a medical-grade device. It’s a key point to note. Most health-related wearables aren’t regulated in the same way as medical-grade devices. Physicians are not only worried about the accuracy of the data being collected, but also have questions about unauthorized device use and data leaks. Consumers also need to trust that the data collected in their health apps will not be used for other purposes of which they are unaware. We can add to these concerns the fact that most health apps are limited in functionality, operate in isolation from each other and are interoperable within existing healthcare systems.

Even for those consumers who see value, faced with a multitude of fitness trackers, the unregulated and fragmented world of mHealth makes it difficult to select applications that provide true health benefits. User retention is also an issue. According to an MIT Technology Review report, about two-thirds of consumers who have downloaded an mHealth app have stopped using it. There are further consumer concerns such as privacy issues, the ability to transfer data across platforms and software, high data entry burden and cost factors which also limit mHealth efficacy.

mhealthGiven the questionable clinical relevance and poor usability scores, is mobile health technology of any real value in health care? While activity trackers can help you get fit, consumer wearables and apps have yet to be clinically proven. However, there is another type of health technology which shows more promise in a clinical setting. These target a specific clinical issue, for example a wristband which can detect seizures for people with epilepsy, a mobile app which helps manage cancer pain, a smart pill dispenser, and apps for monitoring post-operative quality of recovery of patients at home. A global survey conducted by market research company research2guidance, showed that people with chronic conditions are the most common target audience for app developers, and hospitals have replaced physicians as the second biggest target audience. A recent article in the Wall Street Journal reports that hospitals are developing mobile apps to help patients manage serious medical conditions and feed information back to their doctors between visits, often in real time.

Research conducted by Mayo Clinic showed that patients who attended cardiac rehabilitation and used a smartphone-based app to record daily measurements such as weight and blood pressure had greater improvements in cardiovascular risk factors. They also were less likely to be readmitted to hospital within 90 days of discharge, compared with patients who only attended cardiac rehabilitation. MD Anderson has also stepped up patient care with its new Apple Watch feasibility study. Its cancer center is distributing 30 Apple Watches to patients in various stages of treatment for breast cancer. An app called emPower will run on the Apple Watches and the users’ phones. Patients will use the device to answer quick multiple-choice questions about their mood, symptoms, possible treatment side effects (like headaches or nausea), and more. The provider will also use the device to capture activity and heart rate data to help them anticipate potential issues before they worsen and intervene sooner.

Apple’s release of its ResearchKit earlier this year opens up a promising avenue to extend mHealth applications to medical research. ResearchKit is an open-source set of tools that researchers can use to create a clinical research study. It can facilitate unprecedented, real-time access to potentially tens of millions of people, who will participate in research by submitting data through their iPhones. Within a day of launching, 11,000 participants signed up for a Stanford University cardiovascular trial. Stanford said at the time that it would normally take a national year-long effort to get that kind of scale.

What makes a health app successful?

Developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes. A new study from the New York University School of Medicine Department of Population Health reports that only 29% of smartphone owners using health apps say the apps have made a big impact on their health. That’s compared with 60.3% who see little to moderate improvement and 10.5% who say their health did not improve or even declined. A recent global study which analysed the views of patient and carer groups to determine what they want, but are not getting from current apps, reported that respondents wanted an app which provides trustworthy, accurate information alongside a guarantee that their personal data are secure. Respondents also wanted more meaningful and timely communication with their healthcare provider, including the ability to easily schedule a doctor’s appointment, or refill a prescription. Other factors included the ability to self-manage and make informed choices, taking into account different levels of health literacy and differing patient experiences with a medical condition or user experiences when health.

What can developers do to improve the current design and broaden the appeal adoption of mHealth applications?

The involvement of end users during the process of inventing and designing new technologies is a critical success factor. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives.   The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. Developers should involve patients, carers, and healthcare professionals at each stage of the app’s development, making sure it is in line with their needs. If an application does not solve a real problem for the patient it will not be adopted. The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. This can only be done by co-creating applications with patients and their carers.  It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to success. After all, who knows better than the patient what will have the most impact on their ability to get and stay well?

mHealth Potential and Pitfalls

The rise in mobile and wireless technologies has the potential to transform the way healthcare services are delivered, particularly in the management of chronic diseases. Numerous studies have shown that patients who are “activated” in their care experience better health outcomes at lower costs compared to less activated patients. By creating an ecosystem of connected, wearable devices, we can deliver more timely care and monitor patient activity in real-time, thereby reducing hospital readmission rates, improving outcomes, and delivering cost savings. Global consulting firm Accenture recently conducted a study revealing that the United States would save approximately ten billion dollars annually with the introduction of a wider range of digital health services.

Mobile health technologies also have the potential to make healthcare more patient-centric, shifting the balance of power in the patient’s favour. Instead of being solely dependent on health providers, patients can manage their health more proactively. A new study presented this month at the American Medical Informatics Association conference in San Francisco reports that mHealth makes patients feel empowered in caring for their diabetes, leading to tangible health improvements in just a few weeks, as well as a heightened sense of control.

But for health consumers to fully tap the benefits of mHealth, the technology needs to be able to provide meaningful and actionable insights, alongside a UX that is easy and engaging. The value of an app or wearable will remain limited if it does not provide access to actionable data. Tracking metrics in isolation is not enough; you also need to know how to extract meaning from the numbers to turn data into smarter health decisions.

Key factors for adoption by providers and payers include technical support for integration, creating practical reimbursement models and ensuring interoperability within and across healthcare systems. The National Health Service (NHS) in England has begun to address issues of app curation and evaluation by creating its own apps library of health issues. By giving them official backing the NHS hope to give clinicians, patients and carers more confidence in using health apps. In the US two new academic partnerships are set to tackle app curation The MIT/Harvard partnership, Hacking Medicine Institute, believes the most effective apps will be chosen by consumers, not their doctors. Meanwhile a partnership between Columbia University’s HITLAB and Las Vegas-based Social Wellth is focused on putting apps through a rigorous set of standards.

As the mHealth market matures and standards improve, clear winners will emerge. The industry needs to shift its focus on delivering clinically effective tools that make a real impact in the lives of individuals. Only then can we truly declare mHealth a game-changer in health-care.