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Shivrat Chhabra

Dosis Personalized and Digital Medicine Consumer Report

By | Survey Findings

As the makers of an AI-powered personalized dosing platform, the team at Dosis believes in the benefits of personalized medicine. However, as we seek to drive a paradigm shift from today’s population-based dosing to a more personalized approach that determines patient’s unique response to medical treatments, we’ve found that consumer awareness of personalized medicine is lacking.

To gain a better understanding of how big the disconnect is between the advances in personalized medicine approaches and general consumer awareness of its benefits we commissioned the Dosis Personalized and Digital Medicine Consumer Report.

The report was conducted via an online survey that was administered to 1,000+ consumers from March 25 to March 28, 2019, and was weighted for the U.S. population by age, gender, and region.

Here’s what we found:

Consumer Awareness of Personalized Medicine Is Up 4% From 2018

One-third of consumers (33%) responding to the Dosis Personalized and Digital Medicine Consumer Report noted they’re familiar with personalized medicine. This was up 4% from the 29% of consumers who noted being familiar with personalized medicine in a 2018 survey from the Personalized Medicine Coalition.

Still, the progress with educating patients and creating awareness for the benefits of personalized medicine continues to be slow. A previous study in 2013 pegged consumer awareness levels at 27%. That means awareness among the general public in personalized medicine is only increasing by about 1% per year over the last six years.

Somewhat surprisingly, those 65+ were the most likely (37%) to be familiar with personalized medicine. It’s often believed that elderly patients are reluctant to try new technologies or innovative alternatives to traditional medicine, but it’s also true that they are the age group most likely to be dealing with some type of healthcare issue.

Additionally, the earliest uses of personalized medicine have been in oncology, and one-quarter of new cancer cases are diagnosed in people aged 65 to 74. As these older patients are spending more time within care facilities and with their primary care provider than younger adults, it’s likely that they’ve become more familiar with the potential for medicine personalized to address unique health ailments.

Familiarity with Personalized Medicine Increases Patient Interest in It

To find out if unfamiliarity with personalized medicine leads to less interest in using it as a treatment option, we provided respondents with this definition of personalized medicine after their initial familiarity responses: “A medical treatment determined to be best for you based on your unique predicted response or risk of disease.”

We then asked them if they would be interested in personalized medicine options defined in this way. Of the subset of consumers that previously noted they had familiarity with personalized medicine, nearly half (49%) said they were interested in personalized medicine under this definition. Comparatively, of those that said they were previously unaware of personalized medicine only 22% noted they would be interested in personalized medicine with this definition.

Clearly, simply defining personalized medicine is not enough to get consumers to jump on the idea of using it for their future treatments. This is just further proof that patients need to be educated on personalized medicine, as well as the broader notion that they are different in their own way from any other patient over a period of time. Many consumers will still need to be walked through how their unique complement of genes, lifestyle and environmental factors should be considered when creating the best treatment plan for them.

3 in 4 Consumers Track Health Information, Few Share For Personalized Treatments

Similar to past studies, we found that consumer tracking of their own health data on phones, wearables, and other digital devices is skyrocketing. In fact, 3 out of 4 consumers noted they currently collect their health information on digital devices (mobile app, wearable, etc.).

However, unlike past studies, which have found upward of 60% of those tracking data willing to share it with their healthcare provider to improve their health, only 14% said they would be willing to share their data with a provider to specifically influence personalized treatment.

Given those previous findings, this sounds more like aversion to the word “personalized medicine” or the concept rather than an aversion to sharing tracked data with providers to improve treatments.

Meanwhile, Generation Z (18-24-year-olds) were the most likely (17%) to say they would be willing to share their tracked data with their providers to gain access to more personalized treatments. This finding may indicate that utilizing technology and wearables as part of the education plan for personalized medicine among young patients could prove successful.

As At-Home DNA Tests Grow in Popularity Most Consumers Share Results with their Providers

The use of direct-to-consumer consumer DNA and gene tests are also skyrocketing among Americans as 23andMe and soar in popularity. Sales data indicates (analysis here & here) that between 4-8% of U.S. consumers (between 13 – 26M) have taken a DNA or gene test on their own.

The Dosis Personalized and Digital Medicine Consumer Report specifically asked consumers if they have taken a direct-to-consumer DNA or Gene Test with the specific goal of sharing with their provider to inform their treatment plan. Nearly 6% of consumers indicated that they took a test with that direct aim in mind, meaning that may be a top driver of interest in taking these at-home test.

Many of these tests also include an ancestor element where you can track heritage lines, and finding out you have a 4th cousin in Europe can be a good cocktail hour conversation. However, it seems as if consumer demand for gene data to share with their provider is the top reason such tests are bought.

Familiarity with Personalized Medicine Influences Willingness to Take Diagnostic Tests

Testing, of course, can also be done and in more traditional ways within healthcare facilities or with the referral of a provider. However, while more consumers would take a diagnostic test referred to by a healthcare provider for access to personalized treatments than those taking direct-to-consumer tests, there still is some reluctance. Only 24% of consumers said they would be willing to take a diagnostic test for access to personalized medicine treatments.

Answers to this question were also heavily influenced by consumer awareness of personalized medicine coming into the survey. Of those that noted they were familiar with personalized medicine, 43% said they would take a diagnostic test. Comparatively, of those unfamiliar with personalized medicine, only 17% said they would take a diagnostic test for access to personalized treatments.

1 in 3 Consumers Would Go Outside of Coverage for Personalized Medicine

A 2013 study published within The HUGO Journal reported that the “greatest challenges” facing the personalized medicine field were “economic, not scientific.” They may not be far off as we get closer to personalized treatments going mainstream, given the structure of insurance coverage in America. For instance, in 2017 the first approved gene-therapy for Leukemia in the U.S. had a $475,000 price tag.

Of course, the goal with personalized medicine, especially gene-related therapy, is to improve patient outcomes with specialized and short length treatments vs. battling chronic conditions over a lifetime. Therefore the out-of-pocket expenses associated with a one-time $475,000 treatment could be around the same cost, or even considerably lower, than the recurring monthly out-of-pocket expenses that cancer patients see today month-over-month.

So would consumers opt for a personalized treatment outside their insurance coverage if they were confronted with a serious condition? 32% of consumers said they would seek personalized medicine alternatives for a serious condition, but there are financial limits. Nearly two-thirds of that 32% said they would stop pursuing personalized medicine alternatives for a serious condition if treatments were priced more than their annual deductible.

Older Consumers Say Their Dosages Aren’t Optimal or Personalized Enough

Personalized approaches to both chronic and day-to-day dosing could have real future impacts on patient outcomes. With personalized dosing, clinicians will be able to input patient data and receive individual dosing plans based on the stage of the disease or illness, biology and unique personal profile.

Not only could this approach improve final outcomes, but it could also make patients feel better day-to-day by ensuring they are taking the optimal dose for their personalized treatment. That could be a big change from what consumers are seeing today, as 37% of respondents say they feel that the medications prescribed by their provider are at least sometimes not the optimal dosage. Furthermore, with those over 55+, the demographic that consumes the most prescribed medications, that number jumps to 43%.

For patients being prescribed dosages for chronic conditions, this could be especially important. With chronic illnesses, most doctors still prescribe dosing based on what is optimal for the general population versus on an individual level. In addition, the majority of treatment plans are fixed for a period of time versus being dynamically adjusted in real-time. With personalized dosing, clinicians could be able to easily track progress and ensure that patients receive the most effective dose possible at any given moment in their treatment cycle.

Gen Z Provider Choice Is Most likely to Be Influenced By Use of Personalized Medicine

Even with nearly 40% of consumers citing that they often don’t get prescribed medicine that they feel is personalized for their unique ailments, consumers do not appear to be in a hurry to swap for a provider that offers more personalized treatment plans.

In fact, only 20% of consumers noted they would choose a provider based on a physician offering personalized medicine in treatments. The number was slightly higher for the subset of Gen Z respondents (26%) that continue to show an interest in more innovative and technology-driven treatments.

Why Dialysis Care is Moving In-Home

By | Dialysis

More than 15% of adults in the United States suffer from Chronic Kidney Disease (CKD), a progressive disease in which the kidneys are damaged over time, often due to untreated diabetes and/or hypertension. CKD is typically divided into 5 stages that correspond to the degree of reduction in kidney function. Stage 5 of CKD, known as End Stage Renal Disease (ESRD), is typically reached when patients’ kidneys are operating at less than 10% of the level of healthy kidneys, and therefore cannot filter blood the way they should.

At that stage, the only option left for patients is Renal Replacement Therapy (RRT), an umbrella term for treatments that seek to replace the blood filtering function normally performed by the kidneys. The two most common forms of RRT are a) kidney transplantation, and b) dialysis, which involves pumping a patient’s blood over a membrane several times a week in order to remove toxins and metabolic wastes. While kidney transplantation is the preferred method of replacing kidney function, only 20,000 kidney transplants are performed in the United States every year. Meanwhile, more than 500,000 ESRD patients in the United States are left with dialysis as their best option.  

There are two common dialysis modalities: Peritoneal Dialysis (PD), in which a form of dialysis in which the lining of the abdominal lining (or peritoneum) is the membrane used as the necessary filter, and Hemodialysis (HD), in which an artificial membrane is used.

Hemodialysis is further split into two sub-modalities: In-Center Hemodialysis (ICHD), in which patients are dialyzed at a specialized clinic, and Home Hemodialysis (HHD), in which patients and/or their caregivers are trained to perform hemodialysis at home. Of these, ICHD has historically been by far the most common option due to a number of operational and technical advantages for dialysis care providers.

However, ICHD care also has significant disadvantages for patients. It requires adherence to a strict treatment schedule–patients who are treated in dialysis centers are required to have three or four multi-hour treatments a week. The treatment times are not flexible, and patients who do not live close to a dialysis center or are not highly mobile may require special arrangements for transportation to dialysis centers. If treatments are missed, there can be severe impacts on a patient’s health. Despite these disadvantages, 90% of patients currently receive in-center care. However, with recent technological improvements, as well as changes in reimbursement policies to incentivize home dialysis, more and more patients are being treated at home. Here’s a closer look at why more dialysis care is moving in-home:

Technology makes home hemodialysis (HHD) cheaper and easier

Home hemodialysis (HHD) has historically had its fair share of obstacles. First, this form of treatment requires a hemodialysis machine present in the home. In addition to being expensive, these machines have classically been very difficult to learn to operate and have required a care provider or family member to be trained extensively. Even with this thorough training, there has been an ongoing risk of error due to the machines being insufficiently user-friendly. However, dialysis machine manufacturers have begun to offer machines specifically for home care that are cheaper and easier to operate than those used for in-center care. With these offerings, HHD has become less risky and more accessible.

Medicare plans to make makes home care more attractive

Overall, ESRD has seen a policy-driven shift over the last decade from a fee-for-service system to value-based care. The Medicare Improvements for Patients and Providers Act that took effect in 2011 introduced a bundled payment system for ESRD dialysis providers, a move that was intended to control Medicare costs while simultaneously improving patient outcomes.

Just last month, the U.S. Centers for Medicare and Medicaid Services (CMS) announced the creation of a trial plan to redesign the payment structure of in-home treatments to make them more attractive to providers. This plan is also designed to make kidney transplantation more accessible, and to incentivize slowing the progression of CKD in order to reduce the $114 Million the US government currently pays annually to treat CKD and ESRD.

This plan may offer a boost to platforms like Cricket Health and Somatus, who focus on early intervention to slow the progression of kidney disease. It may also offer an opening to companies like CVS Health, which is aiming to develop and deploy at scale a new at-home hemodialysis device to optimize patient care.

Improving patient autonomy and self-advocacy

Home dialysis options provide ESRD patients with an unmatched level of autonomy and allow them to be more involved in their own care. This greater engagement with their own treatment provides patients with the confidence to advocate for themselves and their needs. Additionally, since patients can complete their treatment at home, on their schedule, rather than having to make multiple clinic visits a week, they can plan their treatment around their lives rather than having their lives dictated by the rigors of their treatment schedule. Because treatments can be more frequent and more consistent when done from home, patients have fewer fluid and diet restrictions, and therefore feel the impact of dialysis less in their daily lives.

Looking Forward

ESRD patients have more treatment options than ever before, and clinicians are continuing to help patients become their own best advocates. A revitalized focus on kidney care innovation will continue to make at-home dialysis more accessible, which is likely to result in lower treatments costs and improved outcomes for kidney disease patients.