Patient Partners and Private healthcare

[Annette McKinnon]

With COVID there's been a lot more evidence of private entrants to the public system. You know in Ontario we have OHT's or Ontario Health Teams and they are all adopting the systems that suit them best. I was happy to hear on a webinar this week that work s being done on interoperability.

I've seen Maple for $49 per visit, and Telus with Babylon which they have rebranded to Telus Health MyCare.

This week I spoke to Jeevan Singh who is the CEO of PocketMD. He has created a Minimum Viable Product prototype which you can. see here: https://bit.ly/3hVfjt5

He sees it as the future of collaborative health. So far it has only had internal testing
He also feels he is the only one building something for the patient. His inspiration was his mom who went to see her Dr about chest and arm pain over 2 years, and was told to go home and take a Tylenol, until - you guessed it - she had a heart attack.

Annette

[Kathleen]

I think the topic of private care, including virtual care (which may be different from what PocketMD is doing), deserves discussion.

It certainly seems convenient for patients, but also seems to contribute to the fragmentation of care. I would like to see virtual care, in its broad definition, be integrated into our public health care system rather than further fracture it with add private components.

Kathleen

[Gordon Newman]

Fully accept that virtual care is a critical component of health care in a COVID-19 environment. Further suggest it will be instrumental in forging new health care alliances with OHT partners. However, have concern with entities endeavouring to enter that field without engagement of primary physicians the core of any health society.

My concern is specifically with respect to efforts by non-clinical entities to monetize such efforts with the sole purpose being personal profit versus improved care for the patient/client.

[Alies Maybee]

Kathleen and Gordon, these are key points. I, too, am concerned that these private apps will be outside the public system. They are outside much of our regulatory system, could be monetized so only those with means can consider using them. Also the data they collect may not flow into the public system and therefore not be part of a) planning data or b) research data -- not good for society. There are lots of issues to be thought through. The shame is that these apps often address what the public system should long ago have dealt with in terms of access and timeliness.

[Kathleen]

Does anyone know if or how these issues are being addressed within the public system?

[Colin O'Neill]

I think on balance that these private apps are negative and we should be identifying the quality gaps that are motivating patients to use them and support public, primary care initiatives.

For young, healthy, uncomplicated patients, the apps may be an okay substitute from their usual walk in clinic. However supporting this pathway moves away from preventative, longitudinal care with attachment.

Moreover, charging for a primary care visit through an app goes against our values and legislation of free public healthcare and furthers the inequitable and commonly racist divide, funneling doctors (who were educated with public funds) to those wealthy enough to pay.

[Annette McKinnon]

I saw this article in the Globe and Mail this week. Just in case you have no access to the G&M I am cutting and pasting it into the message.
They recognize the power of data and patient community.
Of course if you read far enough there is a basic free app, or you can pay more - so it goes to the points you have been making.

https://tgam.ca/3jozsY6

Using technology to put more power in the hands of patients

DENE MOORE

SPECIAL TO THE GLOBE AND MAIL

Shaneel Pathak used to carry a binder brimming with documents, test results, prescription information and other critical data from appointment to appointment with a multitude of health care providers as he and his wife, Heing Taing, navigated their way through her cancer diagnosis.

She suffered shoulder pain for a year before a private MRI in 2013 revealed stage-four lung cancer.

“Many people know that the system is fragmented. You have to repeat your story; it’s difficult to navigate,” says Mr. Pathak, co-founder and chief executive officer of HAnalytics Solutions Inc., developer of the software-as-a-service (SaaS) platform Zamplo. The Calgary-based company equips people with information and resources to mobilize their own health data.

“The biggest challenge we had was, there was no place to put your whole health data, no tools to really analyze it,” he says. “And a lot of people, like us, were carrying around this paper binder. Finding community was very difficult.”

It was during this time that Mr. Pathak realized the need for patients to take back control of their own health care journeys by controlling their personal medical information.

“That was the genesis of Zamplo; lived experience and seeing how the power of data and community could help and influence your outcomes when it comes to a chronic disease or mental health,” says Mr. Pathak, a computer engineer with a master’s degree in political economy who worked as an IT management consultant.

He and his friend, Cory Kapser, a software developer, met and in 2015 began talking about a solution. For the first few years, it was the two of them and a used $400 server in Mr. Kapser’s basement working evenings and weekends.

“It was very much a grassroots effort,” Mr. Pathak says.

At the outset, his wife was given months to live but she defied the odds. She lived four more years and was very pro-active in her treatment, connecting with other patients with similar diagnoses all over the world.

At one point, when the cancer progressed to her spine and brain, she was approved for a new cancer drug but there was no published data on its efficacy, Mr. Pathak recalls.

She had to decide between the drug or whole-brain radiation.

“I went to the community and asked them, can you give me your data?” he says.

Seventy-six people responded. He analyzed the drug data and found that most of them had a positive response.

“We took this information to our oncologist and he agreed to postpone whole-brain radiation,” he says.

His wife received the drug, and an MRI confirmed within a month that she was responding well.

“Within two months, we were in Bali,” he says.

When Ms. Taing died in November, 2017, Mr. Pathak sold their house and invested the proceeds in Zamplo, originally called ZoeInsights.

With additional funding from the Alberta Cancer Foundation and the National Research Council of Canada’s Industrial Research Assistance Program, Zamplo officially launched in June, 2020.

The platform, available as a basic free app or as a premium service with myriad tools, allows patients to collect their own health information.

‘SHIFTING POWER TO THE INDIVIDUAL’

Powered by Amazon Web Services, including its Textract feature, patients can scan photos, log questions and observations, even download data from wearable tech.

“That paper binder is replaced with a virtual binder,” Mr. Pathak says. “That’s how we are shifting the power to the individual.”

It provides artificial intelligence (AI) tools that enable patients to securely track and analyze their information, sharing it with caregivers if they choose.

A new feature added in July acts as a “LinkedIn for patients,” he says, tapping AI to connect patients to others around the world if they choose.

Although Zamplo is for patients first and foremost, the technology is attracting the attention of the research community for its potential to recruit a much broader cohort for clinical trials and remote, real-time data tracking.

There are currently three clinical research projects using the platform and potentially five more in the works. Zamplo has about 1,000 users so far and the company has partnered with 14 organizations in Canada, the United States and Europe.

The platform will be used by patients taking part in a study of palliative oncology patients recently awarded the Princess Margaret Cancer Foundation Grand Challenges Award for Digital Intelligence, and is one of two companies in the world chosen by the Institute of Electronic Electrical Engineers to pilot new global mobile health data standards.

Mike Urquhart, Zamplo’s chief operating officer and chief financial officer, says his own family’s experience in the health care system drew him to Zamplo.

His wife, Lorraine, was twice diagnosed with rare forms of cancer and ultimately died of NUT carcinoma. His oldest son was later diagnosed with severe obsessive-compulsive disorder.

A mutual friend introduced him to Mr. Pathak and in 2014, Mr. Urquhart became the company’s first angel investor.

USING AI TO ADVANCE HEALTH CARE RESEARCH

Breaking down the silos in health information and putting it all in one secure place opens a lot of opportunities to tap AI for health care research, Mr. Urquhart says.

All over the world, he says researchers are beginning to use the vast and, for the most part so far untapped, stores of health data to drive innovation and unlock the mysteries of rare diseases, public-health issues and chronic disease.

Zamplo was designed with millions of global users in mind, which could provide invaluable quantities and diversity of data that can be very difficult for researchers to find on their own, Mr. Urquhart adds. There are already users in Canada, the U.S., Australia, Europe and South America.

Amazon Web Services recently launched its HealthLake service, for example, a secure, privacy-compliant, scalable repository for raw health data.

Localized health data can be limited and inconsistent. Amazon HealthLake gives health care providers and researchers access to a repository where they can store, source, query and analyze data using natural language processing. Essentially, it can gather health data from all over the world and make it usable.

“Imagine that information and what potentially could come from that if we honour people’s privacy but with the ability to research based on that information; if we get data scientists looking at that from a machine learning perspective,” he says. “That’s kind of our dream.”

How AI can help drive medical breakthroughs

About 10 per cent of the population suffers from some type of rare disease. The rarity makes it difficult for doctors and researchers to come up with a treatment, as there are so few patients and very little data.

“There can sometimes be no research or information on the disease,” says Aneal Khan, medical geneticist and director of the Metabolics and Genetics in Calgary (MAGIC) clinic at the Alberta Children’s Hospital Research Institute at the University of Calgary, and a child health and wellness researcher in the precision medicine and disease mechanisms program.

“If a patient is looking for a treatment or remedy is really no information on what might have worked in the past for other people, or what might have not worked, what kind of symptoms they’re having.”

Dr. Khan has teamed with Zamplo in a new study called G.R.I.T (Getting global Rare disease Insights through Technology, funded by Alberta Innovates.

It is the first app-based clinical trial in Canada for patients with metabolic disorders, specifically Fabry disease, a rare condition that causes chronic pain.

“This app is an attempt to try to get real-world experience on what patients are actually doing,” says Dr. Khan, who is also an adjunct professor at the University of Calgary’s Cumming School of Medicine.

“Somebody could be using massage therapy, somebody could be using yoga, somebody could be using Tylenol No. 3s, and we want to get real-world data on what they’re using to treat their pain.”

Research often relies on data from pharmaceutical companies’ clinical trials, but if there is no clinical trial, there is no good means of collecting that information, he says.

Patients who enroll in the clinical study will be asked to track their symptoms and medications, as well as non-pharmaceutical treatments. They will also be able to download information from personal health trackers, such as heart rate or exercise. Some will act as a control group, reporting to the doctors as per usual.

“We hope to be able to see this patient was taking more pain medications. Did it actually help relieve the pain?”

This type of detailed tracking has been a breakthrough in diseases such as childhood leukemia, which has gone from an 80-per-cent mortality rate to an 80-per-cent survival rate in part because of this kind of data, he says.

“Trying to track this real-world evidence is something that’s emerging as a way to help patients cope with their conditions, rather than waiting for clinical trials,” Dr. Khan says

A tool such as Zamplo, used globally, also has the potential to provide access to a much more statistically significant sample for research, he says.

The founders of Zamplo certainly envision using AI to analyze and connect anonymized health data on a large scale, leading to medical breakthroughs and invaluable public-health insights.

Fabry disease, for example, affects about 450 people in Canada. That may not be enough for a proper statistical comparison, Dr. Khan says.

“But there are, we would estimate, more than 6,000 cases in the world. Now you increase your patient base by including all patients with Fabry disease around the world.”

That has the statistical heft to lead to breakthroughs, he says.

[Amy Ma]

Annette this is an exciting development! And it took someone who was outside the existing hierarchy and system, informed by the lived experience of his late wife, to take the initiative.

My fear is we will continue to get creep and incursions by commercial private interests so long as governments of all levels continue with conservative bureaucratic solutions, where an innovative and entrepreneurial one is desired and necessary.

[Gordon Newman]

Agree health care needs innovative solutions to help individuals. My concern is that invoking the “entrepreneurial spirit” is a slippery slope. Soon the patient and family caregiver benefit is forgotten in the search for a greater profit margin.

[Amy Ma]

Agree with you that our health (and our personal health data) is not something we want sold to the highest bidder.

Thus far, the governments of all levels haven't done much proactively to prevent the commodification of health data and health services, so that is not helping. Telus, Amazon, and other players are enjoying the "Wild West" of lack of regulation and accountability.

[Gordon Newman]

Suggest that the efforts of the 42 Cohort 1 OHTs in Ontario is being discounted too easily. Significant benefits have already been realized in a number of areas in spite of the challenges presented by the ongoing COVID-19 pandemic. Not sure how you determine that Telus, Amazon are enjoying the “Wild West” of lack of regulation and accountability.

[Amy Ma]

I don't live in Ontario, so not familiar with OHTs.

The original post near beginning of this thread was talking about Telus. And how people have concerns that this will further fragment a poorly integrated health system, give rise to more inequity etc. If governments had proactive regulation, perhaps these concerns would have been addressed prior to the product/service hitting the market.

Amazon has to explicitly state that they have servers for their health data in Canada, because there are concerns that geography of where servers are situated will dictate what legislation applies. When we outsource to private companies, we outsource accountability.

[Gordon Newman]

Agree with you regarding outsourcing. Perhaps your province's Health Ministry shoul look into the creative concept of OHTs (Ontario Health Teams). Essentially Family Health Teams on steroids.

[Amy Ma]

Here's a link to a cautionary tale in the US where interoperable platforms and private companies with black box algorithms cause real harm to people in chronic pain.
https://www.wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/