medical

Apple CareKit, ResearchKit and HealthKit

Creating shared infrastructure to enable creative approaches to research and care

Apple’s iOS, the operating system underlying the iPhone and iPad started as a closed system designed primarily for Apple’s purposes. Unlike the platforms of the 90s and early 2000s, which typically optimized for internal stakeholders of a large company, Apple started towards a newer model: a multi-sided platform. We'll take a look at how it creates new opportunities for patient care, health insights and research as a way to understand how platforms bridge organizations large and small to serve end users.

A multi-sided platform (or MSP) like Apple's uses digital technology to create new outward-facing opportunities for all parties involved. In fact, ongoing relationships are one of the main hallmarks of a successful MSP, where the more users participate, the more value they get.

Read more about MSPs:

For the company that develops and hosts an MSP, this may mean building closer relationships with customers and earning access to more data about them, as well as enjoying the shared revenue created by partners. For partners, value comes in the form of being able to create, distribute, and profit from products the develop on the MSP’s marketplace. And users receive value from the engaging with a constantly expanding set of apps on the platform, as well as by allowing data about themselves to be fed back to them in useful ways, such as recommendations.

The Introduction of the Apple Watch

In 2015, Apple released their Apple Watch—a combination fitness sensor and wrist-sized smart device which linked to an iPhone. In the beginning, its features seemed primarily focused on delivering notifications from the smartphone to the user’s wrist, serving as a sort of bluetooth speakerphone, and delivering basic health data back to a user's phone.

Despite a seemingly small feature set, by 2017—only two years after introduction—Apple was the number one watchmaker in the world.

A 2017 video showing the many ways users have benefitted from the watch describes the ‘nudges’ the device gives about health and activity, the medical and fitness implications, and even a user who used the device to dial emergency services after a car accident threw his phone out of reach.

Commercially, the Apple Watch and its competitors Android Wear devices, demonstrate that once a critical mass of users adopts a ‘swiss army knife’ smart device open to third party development, adoption spikes well beyond that of more proprietary devices (like indirect competitors Fitbit and Jawbone UP). And its standardized platform is now even enabling third parties to create regulator-approved medical devices using Apple Watch, like the KardiaBand, which provides high-quality EKG readings without a doctor’s visit.

The opportunity for research: ResearchKit

Health information had another potential use. Jawbone’s activity tracker and associated caffeine- and sleep-tracking apps were suddenly the biggest longitudinal study of caffeine’s interactions with sleep. The precision of smartphone-centric body trackers and the increasing willingness of end users to share raw data about themselves in exchange for meaningful insight meant that medical researchers who had long struggled to fund research of broad groups of people could also now, potentially, take advantage of the economies of scale afforded by Apple’s digital platform and the users and other platforms connected to it.

To aid ethical, efficient and accurate research using iPhones and wearables, Apple introduced ResearchKit in 2015 with the hope of responsibly opening up more diverse populations for research. The platform standardized reporting of both quantitative data (like heart rate) and qualitative data, like patient stories or feedback. Several years later, the platform has been a limited success, validating the possibilities of digital platforms—but also reinforcing that there are few shortcuts to good researcher engagement with users.

This brief video from Apple about ResearchKit and CareKit shows how research can change the global conversation about health and research.

A new way to empower patients and caregivers: CareKit

Roughly a year after release of the ResearchKit API and program, Apple introduced CareKit, a system which allows caregivers and patients to interact around a shared infrastructure. Apple cited users’ feedback that some of the most helpful components of ResearchKit was seeing insights into their health and communicating regularly with a research or clinician. Apple and its research partners noted that adherence to a care plan was one of the most difficult elements of care, especially after complex procedures like a surgery. CareKit and ResearchKit continue to expand as new use cases become apparent.

This excerpt (watch from ~1:50 for a few moments) from Apple’s Worldwide Developers’ conference shows how Apple introduced the use case for CareKit to software developers, sharing some of the problems it can solve and integrating guidance around how best to serve end users. 

CareKit contains four key elements that retrieve and add information from a central store of data:

Care Card:  Users see a simple, consistent presentation of their care plan across multiple conditions and providers

Care Card: Users see a simple, consistent presentation of their care plan across multiple conditions and providers

Symptoms & Measurements Tracker:  Users can log objective and subjective data about their conditions and experience

Symptoms & Measurements Tracker: Users can log objective and subjective data about their conditions and experience

Insights:  Users can immediately see their own progress on care and the resultant symptoms in one place

Insights: Users can immediately see their own progress on care and the resultant symptoms in one place

Connect:  Users have a simple and secure portal to communicate not just with professionals, but caretakers and loved ones

Connect: Users have a simple and secure portal to communicate not just with professionals, but caretakers and loved ones

Takeaway

The combination of community, marketplace, infrastructure and data into a multi-sided platform like Apple’s means that developers—from small players with unique app ideas to big players wishing to quickly implement new, ‘digital’ offerings—can focus on what they do best and avoid the costly and frustrating process of developing their technology from scratch. Companies can look for software and hardware development kits like HealthKit, ResearchKit and CareKit as ‘indicator species’ of a groundswell of new opportunity to create digital offerings without having to carry all of the risk of such innovations themselves. End users will do the same—when they see investment from major firms like Apple’s, they can be assured there is a decent chance that the device or platform they buy into will continue to get more and more useful.

CaringBridge

CaringBridge is a simple community site designed to give people experiencing a health crisis a central place to inform family and friends about what is going on and coordinate community care (think dropping off casseroles and giving rides to the doctor). Importantly, the site also serves the needs of caregivers, especially primary caregivers like spouses or a child’s parents, as they try to coordinate charitable offers of help with the complex realities of serious healthcare. The site was started when the founder, Sona Mehring, used her background in software to help friends share information about their premature baby. CaringBridge focuses primarily on basic community functions and some simple onboarding. But it perhaps has struggled to raise its profile because its business model is not clear and it is not sufficiently distinct from the existing hodgepodge of social media sites, direct messaging and calendaring apps, apart from being ad-free. A huge opportunity exists to connect CaringBridge or functions like it with larger patient bases so that doctors become more familiar with it and integrate it with professional caregiving efforts. Right now, the use case remains focused on a specific portion of a larger care plan—the lay caregiver. While important, it may not be as powerful as it could be with deeper integrations.

Stories of caregivers

CaringBridge provides stories from caregivers to inspire and educate each other

Stories on Well-Being and Healing

Stories on well-being & healing: CaringBridge provides stories on well-being and healing to inspire and inform members

 

Stakeholders

Caregivers

Caringbridge provides a central place for caregivers to keep friends and loved ones apprised of a complex a health journey and to coordinate offers of help with tangible needs, like rides to medical appointments

Patient/Author

Patients and caregivers can both share stories and other updates from their health journey

Loved Ones & Friends

Loved ones and friends can read content posted by others on the site, as well as volunteer for specific tasks; they can also subscribe to notifications so they are always up to date

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HudsonAlpha

Genomics to tailor medical treatment for each individual—avoiding suffering and overspending

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HudsonAlpha Institute for Biotechnology has made significant progress in the realm of genomic sequencing and analysis. While the cost of whole-genome sequencing is about $5,000, a prohibitive cost for most individuals, sequencing just parts of the genome can provide substantial (and far more financially accessible) results. Though genomic testing is generally thought of as useful for screening (eg, cancer risk) or ancestry discovery, there are other uses. When considered from the point of view of the payer, genomic sequencing to determine receptivity to particular medications can be incredibly helpful. Howard Jacob, HudsonAlpha’s Chief Genomic Medicine Officer, related a story of a young patient who had been diagnosed with a difficult hereditary condition which caused seizures and other problems. An expensive medication was prescribed, at a cost of our $10,000 per month, but symptoms continued to worsen. Finally, after over a million dollars in medical costs, the patient’s genome was sequenced—and it was determined that the young man’s worsening symptoms were being exacerbated by the medication, rather than helped by it.

Jacob illustrated how carefully-timed genomic tests can provide great value to both patients and payers. It would have been emotionally jarring to prescribe the medication and then offer a genomic test after symptoms worsened—no one wants to be told that they were just given a medication toxic to their symptoms. However, at a critical juncture in care where a new medication or other treatment is being considered, offering the test in advance of the medication (‘there may be a medication which works well for you, but to avoid contraindications and extra expense for you, we can take a test to make sure it’s the right one’) can be better received and avoid the situation of the young man described.

By working with insurers and group health payers to identify opportunities for opt-in genomic testing with patients, starting with the most obvious examples of patients who are seeing their care providers more regularly and/or using a complex treatment regiment, genomic tests could potentially improve health outcomes and lower costs for everyone involved—without requiring blanket testing of the entire insured population (which has both privacy/ethical and cost implications).

Ethics in Genomics for Individuals

It is incredibly important to attend to the ethical issues at play. For one, individuals are understandably concerned about being classified as uninsurable if pre-existing conditions are being considered (as they were in the United States before the Affordable Care Act, and in qualification for coverages like life insurance, which still assesses current and future risks on an individual-by-individual basis). Security of individual genomic data is incredibly important, as are ways to provide selective access to such datasets without exposing raw data unnecessarily. For genomic testing to be viable in the mainstream, individuals will need to know enough about the security implications to make informed choices. (For more information on Informed Consent and Doing no Harm, please take a look at our piece at www.causeit.org/data-ethics, which was constructed as part of a larger joint research effort with Accenture and a number of leading data ethics experts).

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It is also important to help individuals understand the emotional implications for themselves and their loved ones if they review their ‘risk profile’ via a genomic profile. Not everyone wants to know—or can handle knowing—about a predisposition to cancer or other serious health conditions. And even learning about existing genetic conditions (like sickle cell anemia) has serious mental health and social implications. As Jacob shared, “the worst are the ‘alpha male’ types—they say ‘just show me everything!’ But the people who have to deal with the emotional fallout of someone learning about a genetic condition or predisposition aren’t just the people who are tested—it’s their families and loved ones, too.” For that reason, counseling prior to testing is required by many standards of care and organizations.

Making Genomic Data Useful: The Importance of Ongoing Interpretation

Additionally, a sequenced genome is only as useful and accurate, from the individual’s perspective, as the research findings used to interpret that genome. HudsonAlpha and other organizations are considering a subscription model for genomic research and review—wherein an annual compilation of research relevant to one’s own genome are compiled, so that if new research comes out about ‘we found the gene for X condition!’ such findings are reviewed on a periodic basis with a qualified professional.

At this point, genomic sequencing is still in its early days. Significant education and outreach work remains to be done (though HudsonAlpha is working on that too), and the ethical frameworks, standards of care, regulations and business models around the highly-personalized realm of genomic medicine are still evolving rapidly. But some of its lessons about targeted diagnostic uses are applicable now.

Related Reading

When Even Genome Sequencing Doesn’t Give a Diagnosis

PillPack & Pharmacy OS

Over 40 million Americans take 5+ prescription meds a day—but only 50% of Americans take them as prescribed. 

According to the founders of PillPack, patients who fall into the category of having multiple prescriptions face the challenge of unsynchronized renewals, inadequate oversight from pharmacists and challenges staying on top of insurance billing and the number of available refills. Additionally, there is the obvious problem of remembering which medications are to be taken at a specific time and tracking if they have actually been taken. And many patients also have caregivers who need to be included in medication management. 

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The PillPack

PillPack attempts to solve the challenges of multiple prescriptions by streamlining the front end of the pharmacy experience. The group medications into the simplest schedule possible in easy-open packs for patients (and their caregivers). Because the PillPack makes it easy to know if medications for a schedule have been opened, the challenge of sharing caretaking duties for a patient is also made easier—it’s not as necessary to have pen & paper or online tools for tracking adherence to a prescription schedule.

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ONLINE PORTAL

Additionally, an online portal for the patient and/or their caregivers allows for easy administration without requiring a trip to a pharmacy or lengthy phone calls.

COORDINATING STAKEHOLDERS THROUGH A PHARMACY OPERATING SYSTEM 

PillPack is made possible by a platform the company calls Pharmacy OS. Pharmacy OS coordinates between four key stakeholders: 

  • Payers, who authorize payments and who need to be checked with to verify authorization
  • Doctors, whose prescriptions need to be captured, and who renew prescriptions
  • Customers (Patients and/or their Caregivers), who need to be supported in understanding their medications’ schedules and interactions, and who update the pharmacy about any changes
  • The Pharmacy (in this case, PillPack), who optimizes the purchasing and dispensing of medication

PillPack is designed to support both patients and their caregivers—allowing them to better manage schedules for medication, link accounts for updates, and reduce the worry related to complex medication schedules.

Pharmacy OS is the system PillPack operates on, coordinating caregivers, patients, payers, pharmacists and doctors.

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Together, PillPack and PharmacyOS have the potential to disrupt the pharmacy industry by optimizing the experience of the large portion of Americans who need to manage multiple prescriptions. It solves several parts of the challenge of adhering to complex schedules from the patient & caretakers’ perspective, reduces the risk of over-spending, renewal surprises or unexpected expenses for patients and insurance payers, and minimizes challenges requiring the last-minute contact of the prescribing physician.

Forward

Personalized medicine with both high-touch care and technology enablement

Forward is a startup based in California combining the ‘best technologies’ for health with personalized care. Their approach promises to blend advanced diagnostics, including genomic testing, with more face-time with doctors and care providers. Additionally, patients can co-create health goals with their provider and receive personalized care through telemedicine (in this case, chat-based messaging) to attend to health concerns early while minimizing unnecessary office visits.

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A Different Look and Feel

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Forward’s offices look and feel different, too. Visitors could easily pass by an important innovation which sits innocuously built into the wall—some airport water bottle refilling machines are fancier. Behind the simple facade lies a clever combination of existing diagnostic technologies in a ‘one stop’ place for basic diagnostics. Once in the doctor’s office itself, patients can expect to be discussing their health situation on very large screens with casually-dressed professionals. Overall, the effect is far more Star Trek sickbay than one-stop family care clinic.  

Getting what you pay for

The VC-backed firm has a difficult path ahead. It will have to convince patients to spend a significant amount of money each month on a subscription model of $149/month, in addition to costs per visit (and for diagnostics). And it will likely have to convince payers to cover somewhat unusual diagnostics (like genomic testing). But if it can, the promise of highly personalized care backed by solid patient data is certainly worth the effort—and could scale as technology costs lower and larger collective purchasers bring their business.

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PatientsLikeMe

PatientsLikeMe offers a new approach to viewing your own health information, called DigitalMe. DigitalMe combines Biological, Experiential, Medical & Environmental data to create a profile of an individual, which is then aggregated with other ‘little data’ about other individuals into ‘big data’ sets. By contributing data, patients hope to receive meaningful feedback on opportunities to better treat or manage their own condition at the same time as helping others. 

Based on your condition, what we’re seeing across conditions, and what we’re learning from the data – we’ll choose from the most advanced scientific resources available today like machine learning to examine your RNA and DNA, your proteins, antibodies, microbiome and metabolites. We’re stretching the limits of breakthrough technologies to find answers.

PatientsLikeMe provides value in a number of different ways and makes money via their partnership with companies who aim to sell products to patients. Operating in a not-just-for-profit model, with particular emphasis of use of ‘data for good,’ they attract people around a shared purpose of better health care. PatientsLikeMe convenes a couple of key groups:

Patients

Share, find and learn: patients can share about their experiences, as well as submit quantified medical data (like health records), biological data (like blood samples) and data about their environment. Currently, PatientsLikeMe says they have over 600,000 members reporting on 2,800+ conditions. Patients have the opportunity to interact with others with the same condition  to directly share experiences and data, and can also seek research/clinical trials.

Partners

PatientsLikeMe partners with “companies that are developing or selling products to patients.” According to the company, these products may include drugs, devices, equipment, insurance, and medical services, with the aim to improve health care. One such partnership was with Walgreens.com, where they cross-referenced their data  with Walgreens’ drug data.

Clinicians

Clinicians are perhaps less-represented on PatientsLikeMe outside of the context of research. There may be opportunities to further that integration for care programs, much in the same way that Apple’s CareKit clinician-liaison infrastructure emerged from ResearchKit, their research-liaison framework.

Researchers

Researchers can apply for access to data about their members of PatientsLikeMe, and can partner with PatientsLikeMe to conduct tests, as they did in a trial with The Duke ALS Clinic.

It is not entirely clear from reviewing PatientsLikeMe’s materials is the degree of integration they offer to third parties. For example, is it possible to easily integrate their data with Apple's HealthKit and CareKit, from the patient and medical professional’s perspectives? Can research projects integrate with Flatiron Health’s approach to large-patient-base research projects, or Apple’s ResearchKit framework for opt-in medical studies? The company indicates that it is ‘in trials’ of integrations with wearable technology devices (presumably like Apple Watch, Fitbit or Android Wear devices). They also indicate pilots of electronic medical record integration.

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Company Milestones

(from PatientsLikeMe)

2017

  • More than 600,000 people use PatientsLikeMe to find new options for treatments, connect with others, and take action to improve their outcomes.
  • PatientsLikeMe named one of Fast Company's Top 10 Most Innovative Companies in Biotech.

  • PatientsLikeMe partners with Jun Wang's iCarbonX to apply next generation biological measures and machine learning, and accelerate a deeper understanding of the basis of human health and disease.

2016

  • PatientsLikeMe expands the scope of patient-generated information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.
  • In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.

  • PatientsLikeMe announces a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

Research Datasets

Datasets at PatientsLikeMe tend to be focused on complex conditions and include many factors. This can be a boon to researchers looking to attend to environmental and social factors affecting research participants, but can also be challenging to ‘control’ for in a study.

Takeaway

PatientsLikeMe stands to bridge the genomic testing science of groups like HudsonAlpha with the community elements of CaringBridge. It’ll be interesting to see where this goes. The angle PatientsLikeMe takes is more akin to sickness care—their videos and on-site materials focus on people grappling with significant conditions, like post-traumatic stress disorder, multiple sclerosis, fibromyalgia or massive depressive episodes. However, since many people may not find a need for this service until a serious condition enters their life or that of a loved one, it makes sense as a starting point. The promise of the platform is huge, though—and when combined with other platforms, it could provide exponential value to patients, clinicians, researchers and medical organizations.  

Citations

Okun S, Goodwin K. Building a learning health community: By the people, for the people. Learn Health Sys. 2017;1:e10028. https://doi.org/10.1002/lrh2.10028

PatientsLikeMe.com