The rollercoaster that almost 10% of Americans ride when diagnosed and treated for a rare disease is a tough one. After a long journey to diagnosis and finally a treatment decision, they can then face another set of challenges in navigating their insurance coverage before the actual treatment can begin.

Rare disease patients typically face uncertainty as to their coverage and expected out of pocket costs. They often have to wait weeks for a prior authorization from their insurance company, require significant training on how to properly administer their medication, and ongoing lab tests and monitoring by their provider. Not only is the disease itself taxing, the management of it can be confusing and time-consuming.

For patients and families navigating this emotional and often isolating journey of a rare diseases diagnosis, support is needed and welcomed.

HelpAround + EnvoyHealth

With these challenges in mind, we are excited to announce our partnership with EnvoyHealth on our joint mission to simplify the path to therapy for patients diagnosed with rare disease and their families. With Helparound’s robust patient concierge and EnvoyHealth’s vast patient access and support capabilities, there is an unprecedented opportunity to provide patients with a state-of-the art experience that meets them where it is easiest and most convenient for them, on their mobile phone.

Our integrated approach provides seamless support from onboarding through ongoing engagement, paving the path for an improved treatment experience for patients diagnosed with a rare disease and their caregivers.

How it works

Together, EnvoyHealth and Helparound will offer the following through our patient concierge service:

●     Chat support when it is convenient for patients and caregivers

●     Clinical support and education about their disease and their treatment

●     Reminders to make sure clinical testing requirements are clear and met on time

●     Patented patient matching technology for optimal peer support

●     Disease-specific communities for both patients and caregivers

●     Reimbursement and insurance consulting

●     Access to financial support tools

For more information, please contact rare@helparound.co

EnvoyHealth and Helparound will be at the Asembia Specialty Pharmacy Summit in Las Vegas April 29th-May 2nd. To set a meeting, please contact lindsay@helparound.co or request a demo here.

Copay cards are a direct way for manufacturers to reduce out-of-pocket costs, supporting patients’ ability to choose their treatments instead of being pushed towards generics by their insurance. Yet the opportunity copay cards offers goes far beyond just an out-of-pocket discount.Copay cards open the door for patients to even approach a new treatment, knowing that their costs may be offset in some way. Any new diagnosis or drug regimen can be highly intimidating – especially in the case of pricey specialty drugs – and copay cards are the way manufacturers support the patient to jump a major hurdle: affordability.

Patients expect more, and so do brands

Just as consumers have gotten used to transferring money and ordering flights on the go, they also expect to order, buy and manage their meds easily through mobile. Distributing copay cards through mobile is a no-brainer from a user experience perspective; but no less of a no-brainer from a business point of view.

With the right mobile data capabilities, a digital copay card can unlock invaluable insights not only on copay activation and utilization, but also on the patient’s journey on therapy. Such data can enable brand teams to personalize the resources and messaging they offer each patient to drive better activation and adherence, all with a personal touch.

Here are some examples of those signals and potential insights that brands can unearth by placing smart copay cards on patients’ smartphones:

Direct copay signals:

Helping patients get started on their treatment is always a challenge – copay card utilization data can help:

• Copay card unredeemed – Knowing that a card has been activated but not redeemed may signal that the patient ran into a hurdle in their path to therapy, needs some extra support to get going, or often just doesn’t realize that they have a discount in their hands, even after they activated it. Sending an app reminder or making a case manager aware of such patient could be the difference between successful and failed on-boarding.
• Changes or halt in copay card redemptions – Similar to an unredeemed card, notifying a case manager of a sudden halt or time shift in redemptions can enable an intervention to prevent the ubiquitous patient drop-off.
• Copay cards “off schedule” – Prescriptions set particular dosages and require on-time refills to maintain therapy schedules. People who lag with refills or take their medication off schedule may have less favorable outcomes on treatment. By detecting these signals, a case manager can be alerted to this patient and reach out to help.

Indirect (passive) copay signals:

Using a smart mobile platform to host and serve the copay card also allows case manager to gather passive activation and adherence signals for analysis and tailoring of their programs:

• Repeated hospitalizations – Mobile platforms that can detecting frequent hospital visits (ideally without draining the battery with GPS), may indicate potential disruptions to therapy or uncontrolled symptoms, e.g. flare-ups or asthma attacks. After this type of signal, a a check-in phone call from a nurse or case manager may help a patient get through the rough patch or offer a nudge to see their HCP about a dosage update.
• Patient is traveling – Perhaps there are travel tips that every patient needs when they are away from home and taking a particular medicine: hints at keeping their medicine at temperature, how to administer doses in different time zones, etc. Mobile patient data can detect when people are on the road, and offer appropriate content and support resources to help stay on therapy throughout and after the trip.
• Patient is missing out on workdays – Identifying that the patient is at home, instead of at work, for several days may indicate a variety of challenges. Mobile patient data can detect this change in day-to-day behavior and notify the case manager that this patient needs special attention.

In summary, digitizing copays cards using mobile patient data enriches patient programs to improve their services and help more patients on-board and adhere to their therapy regimens.

To learn more about helparound’s mobile patient data, visit us at www.helparound.co

Apple just announced a new horizon for health apps: a Health Records API. This move is a breakthrough for patient-centered health management, in general; and specifically for people on specialty regimens, this may be a game changer.

What did Apple announce exactly?

At the start of 2018, Apple updated its Health App to centralize patients’ medical data from multiple providers into a single view on their iPhone. Now they have announced a new API that builds on this, allowing patients to share their personal health data with their favorite health apps. Apple hopes developers and researchers will “create an ecosystem of apps that use health record data to better manage medications, nutrition plans, diagnosed diseases and more.”

With the patient’s iPhone as the focal point for integration, an opportunity arises for anyone offering patient services through mobile to provide even more patient-centric services. In a sense, each patient’s iPhone becomes a personal data center and patients can now give apps different levels of access to their EHR (more on the benefits of personal data in pharma here)

Some specialty brands can win big

So what is the opportunity for specialty brands?

Specialty brands almost always accompany their drug launches with patient support programs, often administered by patient hubs, to support patients along their journey. These programs help patients with deal with insurance coverage, on-boarding to the new treatment and adherence to the therapy.

It’s all in the data

But while striving to support patients, brands and hubs are typically flying blind when it comes to tracking each patient along their personal journey. We already see hubs starting to invest in tools to help better harness patient data, yet actionable patient data throughout the patient journey and in real-time is still a major gap.

Leveraging Apple’s new capability, specialty brands can now expect hubs to know when patients reach critical milestones along their journey. How? By deploying existing patient support programs on mobile data platforms that integrate with Apple’s new EHR capability (see below to learn more on Helparound’s mobile patient intelligence).

What patient milestones can hubs identify given access to a patient’s EHR?

1. Medicine prescribed: Prescription logs are almost always part of the patient’s record.  Thus once a drug is prescribed, data platforms know it and so can the brand’s hub (provided, of course, that the patient agreed to share such data);
2. Lab tests available: Many specialty drugs, e.g. biologics or those that the FDA requires a REMS protocol involve a qualifying lab test before the doctor can prescribe them. With the EHR now on the iPhone, and with the patient choosing to automatically share such information with the hub, the case manager can now be notified once a patient has conducted the test (which happens to be good timing to send the patient back to the doctor to review the lab test results)
3. Dosage change: A hub can also adjust it’s engagement pattern with the patient knowing based on change of dosage or therapy regimen per the iPhone data.

Data privacy done right

Not only is this new API great for patients, hubs and brands, but regulators and legal teams should also be delighted with the trend of turning a patient’s personal phone into their patient data hub. Data sharing decisions are put directly in the patient’s hands; all stakeholders benefit from the ease of sharing data while optimally ensuring privacy.

Data integration done right

Say the term “EHR integration” in a team meeting, and half the room cringes… because the fragmentation, complexity and sensitivity of EHR systems is at an all time high.  

Good news IT folks!  A new integration platform has arrived, and it’s slick, simple, and free! (at least for your organization). Please meet: the iPhone. Oh, and every iPhone comes with a built-in decision maker on which integrations are allowed to take place. Please meet: the patient.

Apple did it again. Just like what the iPod did to Music, and Apple Pay did to payments, it introduced simplicity into a sensitive, convoluted challenge, by giving control back to the consumer.

And specialty brands?  They can win here by gaining visibility into the patient journey, by deploying their patient support programs on mobile platforms that empower patients to first own and then share their personal health data with the organizations that help them the most.

In the previous segment of this article, we shared our excitement over Helparound’s recent patent for its novel matchmaking technology to connect patients through our mobile intelligence platform. Companies like Tinder and LinkedIn brought matchmaking to dating and job seeking – it only makes sense that such technologies would also help people dealing with health issues.

In specialty therapeutics jargon, the steps of getting on new therapies are referred to as: Access, Activation and Adherence. Here in part 2, we dig into how matchmaking technology can support each of these steps.  

Therapy Access

Following the initial shock of a life-changing diagnosis, one of the first questions to arise is: how will I pay for this?  Especially in the U.S., almost regardless of one’s insurance, specialty therapies are costly. Insurance plans have various coverage rules and, quite often for specialty treatments, there are numerous patient assistance programs from manufacturers, non-profits and other sources.

Finding an individual who lives in the same state, is the same gender, age group and even employment status, can help bring order to the mess of coverage options for a particular therapy or treatment. Instead of extensive hours of Internet research, waiting on hold for the Medicare call center or researching a specific plan – instead of reinventing the wheel each time – pose the question to people who have gone through the same experience. Sharing information about access complexities can be both a time saver and a helpful support system to relieve the financial stress of a new diagnosis.

Activation (aka on-boarding)

Hand-in-hand with treatment access issues comes the hurdle of on-boarding the treatment itself. Such a diagnosis is overwhelming enough for the entire family; now the patient and caregiver are expected to begin self-administering injections, IV, or even dialysis.  Further, paying attention to a nurse on a home-visit showing how to administer the treatment, or even just sitting down and carefully reading a patient starter-kit, can be a major hurdle in such emotional state. The starter kit also lacks an interactive aspect for continued engagement as questions arise, which they inevitably will as one gets going with treatment.

Again, this is where patient matching can shine.  For example, take kidney failure patients, who typically dialyze in clinics multiple times a week, but may also be able to do so at home, using home dialysis.  This therapy has many advantages: time, freedom, the ability to dialyze more often without an appointment or over night. However, the responsibility for carrying out this medical procedure lies with the patient and his/her caretaker, an intense commitment for both, often simply because self-insertion of needles without medical supervision can be super overwhelming.

Many resources can help a patient transition from in-clinic to home dialysis: educational content, remote support, videos, etc. But as much evidence has shown, matching patients who are dealing with similar challenges – or better yet have already solved the issue in the past – is “a critical and effective strategy for ongoing health care and sustained behavior change”. Home dialysis is no different: connecting with another patient who went through a similar transition, can make a big a difference.

As we mentioned in part I of this article, matchmaking does not alleviate the challenges or worries that come along with a new diagnosis or treatment, but it can ease the anxieties that accompany it. In this age of technology, peer matching won’t alleviate a condition but it can hopefully connect people to make treatment activation a bit less daunting and relieve some of the lonely and overwhelmed feelings that accompany a diagnosis.

Adherence

Always the trickiest aspect of a complex treatment, especially with specialty therapies, treatment adherence may be the arena where matchmaking technology can have the most impact. While there are a variety of dynamics that lead to nonadherence – ranging from forgetting to take medication and lack of symptoms to cost pressure or insurance paperwork – ~$300B is spent each year dealing with the problem of people not sticking to their treatment regimen.

Sticking with any regimen can be a challenge – if you know it’s going to continue for a long time, even a lifetime in many cases, it can be even more daunting. High-touch therapies are often accompanied by patient support programs executed by specialty hubs or pharmacies, which currently rely mostly on nurse call centers and monthly check-ins. While these connections are important, it is not likely to address some of the most common reasons for drop-off, including forgetting a dose or feeling better due to the medication. Similar to having a workout buddy with whom you share goals, commit to the workout regimen and encourage each other when it gets touch – having a treatment buddy with the same goals can lead to better treatment adherence.

Mobile Patient Intelligence

At helparound, we developed a novel algorithmic method to match patients to each other to provide peer help and support based on similar medical circumstances. Helparound was awarded a patent in 2017 for our unique method of connecting patients to each other. Combined with additional resources offered through our Mobile Patient Intelligence platform, though no technology makes the condition disappear, Helparound is here to transform families’ navigation  a life-changing diagnosis.

“Behavioral targeting” is the marketer’s term for techniques to increase the effectiveness of online publishing and advertising with deep user data. Facebook has dominated the news recently because of behavioral targeting driven by its data management policies. Yet for many users, Amazon’s Alexa eavesdrops on us 24/7 and she’s perceived as “part of the family.” Both Facebook and Alexa use similar techniques to learn about our preferences, yet it feels different depending on how the data is being used. So the issue of behavioral targeting is not defined by the practice itself, but the uses to which it is put.

Most of us notice that internet ads appear as though they’re following us. Perhaps there’s an ad for a clothing store where you were recently shopping. Or there’s an ad for a new degree program that is strikingly similar to an institution you were just looking into. Quite often these ads are appealing – those are the times when such behavioral targeting (and re-targeting) are doing its job well.

In specialty pharma, behavioral targeting has the potential to significantly help patients via better patient services, as well as create value for hubs and manufacturers. The key is active use of smartphones (which is more and more common among the general public) and/or online activities, and access to user’s data habits in any of these media.

Understanding the mechanics of targeting
To understand how behavioral targeting can augment specialty patient services, let’s look at the bread and butter of behavioral targeting: implicit data. Users leave a crumbtrail of passive data that advertisers leverage to catalog users’ interests. For example, the articles users recently read shed light on current interests; connections reveal people we relate to; and fans can be identified by watching a particular sport or playing a video game.

Data about how a user consumes content is also highly informative: at what time of day someone reads about a particular subject, where they get groceries, which device they use – mobile or desktop. Of course, geographic data based on smartphone location throughout the day can also be collected, since people take their phones everywhere. Using these insights, computer algorithms analyze how to segment people and optimize advertising, to continuously improve content delivery to each particular user.

Using behavioral targeting responsibly
So how can this data help patients and their families navigate life after a diagnosis? The patient journey metaphor meshes well with behavioral targeting, as throughout any journey there are ups and downs, smooth and easy moments as well as various questions. This implicit data can be used to understand a person’s needs at a particular juncture in the journey in an effort to smooth the way. This is relevant for all conditions, both in specialty pharma sectors and mass market.

We can gather data points to figure out important health indicators such as when someone goes to work or comes home, when and where a treatment takes place, is someone sleeping enough or not getting exercise. This can be done by platforms like Neura, an AI-driven user awareness platform that utilizes smartphone signals along with WiFi and Bluetooth signals to get to know each user. This information feeds into platforms like Helparound (a technology partner of Neura) to gain insights used to achieve two goals: (1) reduce the burden on patients and their caregivers directly, and (2) help hubs better time their outreach to patients. Systems can also send timely reminders to schedule doctor appointments or ask if a ride to a treatment is needed, calculating potential traffic on the way and suggesting the best time to leave; or to notify that a nearby pharmacy now accepts the user’s insurance.

Changes in behavior may signal therapy disruptions, which can have a negative impact on patient outcomes. By understanding and predicting what is happening in the patient’s physical world, behavioral targeting can help detect that a patient is travelling and unavailable to pick up their prescription refill – allowing a specialty pharmacy to customize patient engagement. Any change in routine can be identified, allowing the power of behavioral targeting to work its magic. Additionally, those patients who want the benefit of reaching out to others experiencing a similar situation can take advantage of a platform like Helparound to connect with others.

Specialty pharma applications
In summary, behavioral targeting can both optimize a patient’s experience and enrich hub’s understanding of its patients.

In our new reality where data is collected all day, everyday, we see the value of behavioral targeting as well as the complexity of data management. Fortunately, in the healthcare sector, HIPAA exists to guard our privacy. So although recent headlines may cause concern about data gathering, we believe these technologies can be successfully used to help patients, their caregivers and the hubs that serve them. By offering content for patients and caregivers, bringing up useful services at the right moment, and acting just when a patient might need a bit of extra TLC, the entire specialty health ecosystem can transform the healthcare experience.

You’re at the doctor’s office, just after learning that you or your loved one has a disease you’ve never heard of. The doctor says it’s not a death sentence but in the same breath describes an overwhelming regimen of lab tests, weekly injections, nutritional guidelines and pills with scary names. Your mind is flooded: What is this? How will I pay for it? What will happen to my family? What will my friends say? How will we treat it? What will I have to change? Who can possibly understand what I am going through?

Now imagine you can pick up your smartphone, and swipe to find five other people around your age, maybe even from your city or state, who have been living with the same disease for quite some time. They can’t make the disease go away and it still sucks, but they’ve offered to lend a hand – or a shoulder to cry on – that might make dealing with it easier. Meet Jane, her daughter was born with a rare condition and she can offer insights on a helpful exercise routine or diet tips. Or perhaps Anne is a better fit – she was recently diagnosed and has already tried a number of treatments about which she has many opinions.

Companies like Uber, Tinder and LinkedIn have brought “matchmaking” technologies to dating, job hunting, networking and ride-sharing. It is convenient, instantaneous, feels personal and can be so effective that couples get married after “the internet introduced them”. So it only makes sense that such technologies may also benefit in a situation like the above, in the lobby of the doctor’s office, flooded with questions.

In the specialty health sphere, on top of sending shockwaves through the lives of the entire family, and overwhelming the daily routine with notoriously complex specialty , a new diagnosis also may bring extreme loneliness upon the individual, a result of the small size of many patient populations. In such small patient groups, the impact of successful matchmaking can make the difference between desperation and hope.

This is why we are so excited by the patent Helparound was recently granted, for our unique algorithm for matching patients with similar others. Matchmaking can be so important in helping an individual navigate through tricky insurance issues, getting used to a new, complex treatment, accessing new treatments if necessary and, most important, staying motivated. Or in our industry jargon, patient matchmaking technologies may help drive therapy Access, Activation and Adherence.

November 2016: I just left a routine ultrasound in week 15 of pregnancy, told that my son has a bilateral cleft lip. I’m devastated and my initial web search yields this fact: 85% of the time, it is a physical manifestation and can be surgically repaired; 15% it is one expression of a terrible chromosomal syndrome. I would now face 5-6 weeks of tests, none of which I had planned on or knew much about. I left the medical center and began researching everything I could about all the syndromes, the tests and their risks, cleft lip treatments, surgical techniques. I read hundreds of websites, some valuable and some less so. I would spend the next 6 weeks anxiously awaiting a barrage of test results; once I knew that it was not a chromosomal issue, I would spend the rest of pregnancy having more regular tests and ultrasounds than I had during the previous pregnancy, waiting to see how this would all go for us.

I joined the helparound team because I connect personally to our mission to support families facing life-changing diagnoses. When I first began discussing the opportunity with Yishai in August 2017, I had just come off of almost a year of navigating the diagnosis, treatment and surgical repair of my second son’s cleft lip. Though not a chronic condition, I identified with the issues we discussed addressing: dealing with a diagnosis, learning about a condition, navigating a complex treatment regimen, preparing for a new unknown reality.

I initially met Yishai and Shlomi a few years ago while working for a massive pharmaceutical company’s digital accelerator. We were in close touch with them and I watched as helparound iterated beyond the diabetes community to its new goal: provide stellar mobile support to small patient populations. I was impressed by many things, but two qualities stood out in particular: their dedication to helping people and their understanding of the possibilities for technology to make people’s lives easier.

April 2017: Oliver was born. As soon as I saw him, my anxiety melted away and I was enamored… and also realized that being a mother to this little guy would just be a bit more complex than my previous experience. I met with the surgeon and periodontist within a day of his birth to begin preparation for surgery. The brilliance of treating a cleft lip is they utilize the natural high speed growth of babies to close the cleft and improve surgical outcomes; in our case this would involve taping and an “outfitted” oxygen tube that would help shape his nose. We would be responsible for changing and cleaning all this twice daily. The next 4.5 months until surgery would be a whirlwind of doctor’s appointments, calculated weight gain, blood tests and so on. My research regimen continued and I learned everything I could about any potential side effects of his cleft, what preventive checks I must ensure he has, how to double feed him so he gained enough to have surgery at such a young age. I spent those months organizing my son’s reality around the success of his surgery. Time passed, he grew, we got through everything and the surgery was a glowing success. We will maintain a light schedule of check-ups for the next few years and life has returned to its rhythm.

Sitting across the table from Yishai in August 2017 talking about the navigation of complex treatments for chronic diseases, I felt connected to the idea that these people need mobile support. I did everything on my phone with Oliver, from research to setting appointments to ordering taxis, but I used a combination of apps that I found to serve my needs. Easily finding information on a disease in the initial shock following a diagnosis or the ability to ask others with the same experience questions at any time is an invaluable resource, especially on your phone as you rush to to the next appointment or test. Knowing you have a comprehensive resource and a peer community can make the whole picture seem less daunting. As we began brainstorming more possibilities this mobile support platform could potentially offer, it was blatantly obvious that this is the way I want to spend my workday: making it easier for mothers* to navigate their children’s treatment.

*Disclaimer: Of course I want to make it easier for all caregivers, but in that moment I have to be honest that as a mother I thought about the mothers.