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How Alike Health Taps Into the Wisdom of Chronic Illness Patients to Improve Your Healthcare

How Alike Health Taps Into the Wisdom of Chronic Illness Patients to Improve Your Healthcare

In this article we explore the concepts of ‘The Wisdom of the Crowd’, the problems currently faced in healthcare, and how the Alike Health app can be used to improve your healthcare.

Chronic illness management is a tricky and touchy topic, as every patient is unique and different. Every healthcare professional has a different medical opinion, too.

People with chronic illness have much wisdom and knowledge to share. That’s inevitable if you live with chronic illness day in and out! These resources often remain untapped, when they could benefit many other patients, too.

*Disclaimer: Whilst this post is sponsored by Alike Health, all opinions expressed in this review are my own. Please note that I am not a medical professional, but have done meticulous research from credible sources for this article. Nothing should be taken as medical advice. Always be sure to check with your doctor before you start on any new treatment or protocol. This post may contain affiliate links, which will cost you nothing to click on. I may earn a small referral fee from them, which helps to keep this blog running.

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How Alike Health Taps Into the Wisdom of Chronic Illness Patients to Improve Your Healthcare

A Brief Introduction to the Alike Health App

I’d like to briefly introduce Alike Health before we dive in, so that you can see the connections, how and why what they’re doing is pretty amazing.

Alike Health aims to aggregate complex health data from patients. From there, they produce meaningful solutions that can be used to improve your healthcare. They match chronic illness patients, or ‘Alikes’, based on Patient Similarity Networks (PSN).

A one-size-fits-all solution rarely works when it comes to chronic illness and pain management. Alike Health allows patients to learn from others who are truly clinically similar to them.

A Brief Video on How the Alike Health App Works:

TL;DR

Download and explore the Alike Health App now to discover people who are most like you, and what you might have been missing in your disease or treatment management.

Download on the Apple Store Get It on Google Play

An Overview on the “Wisdom of the Crowd”

The ‘Wisdom of the Crowd’ originated in a Victorian country fair, when 787 participants were asked to guess the weight of a cow.

The answers were very widespread around the true value, yet Sir Francis Galton realised that the mean average was near perfect. Only one pound off the correct weight, which was better than any singular guess.

New York Times writer, James Surowiecki, popularised the term ‘Wisdom of Crowds’ in 2005, with his book that goes by the same name.

There has been much research into this phenomenon, including its benefits and fallacies. In order for the Wisdom of the Crowd to work, it must satisfy a few minimal conditions: Independence, Diversity and Aggregation.

We won’t delve too much into the intricacies in this post, but the gist is that all individuals – or chronic illness patients – have ‘private’ knowledge, experiences and ways of thinking that are unique.

We also hold intrinsic biases, hence the need for independence, in order to properly aggregate opinions into something that represents a form of collective intelligence.

The Wisdom of the Crowd can then be taken a step further, to produce actionable insights to many different types of real world problems. This is often seen in finance and forecasting, and now, with the help of technology and regulation – in healthcare.

The Wisdom & Life Experiences of Chronic Illness Patients

Whilst chronic illness does not define a person’s worth, it still has a huge impact on their quality of life and therefore, may modify their behaviours, abilities, perspectives and/or identities. For example, an extroverted person may become withdrawn due to chronic fatigue and chronic pain.

Symptoms, pain management and treatment protocols may be listed out in medical textbooks. But medical textbooks do not breathe, walk, wake, sleep or live with chronic illness itself like patients do.

People who have been living – even thriving – with their chronic illnesses over the years have a lot of wisdom to share. They have also gained much ‘private knowledge’ that is often learned the hard way from firsthand experience.

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Improve Your Healthcare - Tap Into the Wisdom of Chronic Illness Patients on Alike Health

The Impossibility of a Singular Healthcare Solution for Chronic Illness Patients

Chronic illness symptoms are unpredictable and can come and go at any given moment. They are also often invisible and near impossible to pin down. Many patients take decades to get a proper diagnosis.

Patients themselves live very different lives as well. Let’s take for example Lucy, a 20 year old teenage girl who lives with PCOS, Endometriosis and Celiac Disease and who is still able to exercise twice a week. She probably wouldn’t want to get advice from John, a 75 year old male with Hypertension and Type 2 Diabetes, who refuses to do any exercise at all.

How then can universal treatment or a single solution be provided? The short answer is that that’s not possible. Every chronic illness patient’s treatment plan needs to be customised to fit their needs, and pain management strategies can change frequently, too.

The Importance of Finding Patterns in Chronic Illness to Improve Your Healthcare

Managing chronic illness has a lot to do with noticing patterns or triggers, and having the wisdom to cut the cord before it explodes. Chronic illness patients often need to stop before they even reach their maximum fatigue or pain mark, or risk payback and yet more downtime.

Different people have different ways of tracking these patterns, and cope in different ways. Some like to journal, whether by hand, via an app or Excel.

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The Importance of Finding Patterns in Chronic Illness to Improve Your Healthcare

Aggregating Patient Knowledge and Wisdom Into Tailored Solutions to Improve Your Healthcare

Methods of pattern tracking are often individualistic in nature, and specific to only the user.

Such information and experiences may be scattered, but they are part of a more global, collective knowledge. What if they can be aggregated in proper contexts, to produce solutions that benefit more patients who are just like them medically?

What Alike Health does is to assess many of such differences with the aid of technology, so that the ‘Alikes’ you meet on their platform are as similar to you as can be. You will have many overlaps not only in terms of chronic illness(es), but also lifestyle, treatments, disease progression and more.

How does that work, you ask?

Alike Health and the Use of Patient Similarity Networks (PSN)

Alike Health is an app that serves as a social platform for patient empowerment. It does this through the use of Patient Similarity Networks (a form of cluster analysis), big data, AI, and also medical insights from healthcare professionals.

PSN is becoming increasingly useful for precision medicine. As per Science Direct:

“Patient similarity networks are accurate, intuitive, preserve patient privacy, and supply mechanistic insight.”

Alike Health aggregates the clinical data of over 23 million patients from around the world, and has a user base of thousands of users. This is an impressive feat since they only launched in late May 2021. Every new user becomes part of an even larger set of this diverse ecosystem.

As algorithms improve – built upon real world data from patients themselves – healthcare can become more personalised and better for all. Companies such as Alike Health envision such a future, and are paving the way towards it.

It goes a step further as well, and provides you with the ability to connect with your ‘Alikes’ through their app. This all takes place within an anonymised space that allows you to feel free about what you share.

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Find out how you are Alike on Alike Health
Alike Health - Secure and Anonymised Space

The Knowledge of Healthcare Professionals

The knowledge and wisdom of doctors are not to be discounted either, as they did undergo years of intense studies, and gain experience the more they practice medicine.

Every healthcare professional has their own opinion about a problem and its solution(s). That is why we often seek second, third or more opinions from different doctors.

The solution often isn’t black or white however, especially when it comes to treating and managing chronic illness. Often a mix of treatments and pain management strategies are needed.

The Problem with Isolated, Incomplete Healthcare Knowledge

Yet doctors are often trapped within a small circle that isolates the body into singular parts. In fact, a study done by John Hopkins Medicine found that the third leading cause of death in the U.S. is from medical errors:

“The researchers caution that most of medical errors aren’t due to inherently bad doctors, and that reporting these errors shouldn’t be addressed by punishment or legal action. Rather, they say, most errors represent systemic problems, including poorly coordinated care, fragmented insurance networks, the absence or underuse of safety nets, and other protocols, in addition to unwarranted variation in physician practice patterns that lack accountability.”

The Importance of a Diversity of Medical Opinions

I have experienced this firsthand as a patient, going from cardiologist to neurologist to haematologist and more. I basically felt like they were examining slices of meat, instead of me as a whole being.

However, when it came to one major medical life event, my rheumatologist communicated with my other doctors to assess the situation. The knowledge and wisdom from these different doctors helped him to assess my situation with more clarity.

The Need for Additional Patient Insights

What I also wish I had was another chronic illness person to talk to, especially someone who had gone through, or was going through, a circumstance like mine. Patient insight and experience would have added even more perspective. Kind of like allowing me to ‘zoom out’ even more, to see the bigger picture a little better.

When knowledge and wisdom of both patients and doctors are used to join the dots, a bigger and clearer picture starts to form. Good communication is the vehicle for the transmission of this data.

How to Assess and Improve Your Healthcare

Having gathered all these questions, thoughts and research for yourself, how then, do you assess and extricate useful solutions from them? All that data can often feel overwhelming and even conflicting.

What are Your Healthcare & Life Goals?

First, you need to define for yourself a set of goals in relation to healthcare and your life. That’s pretty broad, yes, but it all ties back to how you want to live your life, and what your values are. This is how and where you will find purpose and the motivation to thrive, despite chronic illness and chronic pain.

Conferring with People Who Live with the Same Chronic Illness or Symptoms

There are many support groups online and offline in the form of meet ups, Facebook groups, Instagram communities, apps like Alike Health and more, where patients like yourself can be found.

Their experiences, tips, advice, reactions to medications, treatment protocols, and just about everything differs. Yet, they do live with chronic illnesses just like you, and have amassed wisdom on ways to cope over the years.

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Talk to People with Chronic Illness Who Understand You on Alike Health
Explanations by Clinical Physicians on the Alike Health App

The Difference with Alike Health

A major plus point about Alike Health is that the people you connect with aren’t only similar to you in one but many ways.

For example, out of a thousand people with Lupus, almost each one of them will have a different set of comorbidities. Their ages, genders, lifestyles, earnings and access to healthcare will also vary. Which in turn impacts their treatment plans and options, on top of other things.

Alike Health takes more than the fact that you have Lupus into consideration. It assesses all your clinical records and data, to match you with others who are most clinically similar to you.

As far as I know, there is no other health app out there that helps you to find and form your very own unique community like Alike Health does.

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Alike Health - The One Health App That Helps You to Find Your Own Unique Chronic Illness Community

More About the Alike Health App

There’s more to the Alike Health app than just meeting your ‘Alikes’ and connecting with them as well. Here’s more about what they can do to improve your healthcare even further.

Connect Your Medical Records to Alike Health

You can connect your medical records to Alike Health if you’re based in the U.S., and their technology processes the data for you to provide meaningful insights.

For example, a patient may have Endometriosis, Fibromyalgia, POTS, Crohn’s Disease, Depression, Anxiety and Bipolar Disorder. That’s a confusing mix that covers women’s health, nervous system, autoimmune, mental health disorders and chronic illnesses!

Not many people are going to have such a close match to this patient’s mix of disorders and illnesses. Even if they did, their disease presentation is going to differ – drastically.

What Alike Health strives to do is to take each patient’s medical records, process it through an Alikeness Score, then suggest better healthcare options for each patient by presenting data from millions of patients around the world, and matching them with patients who are as medically similar to them as can be.

This excerpt from Health IT Analytics is a pretty apt one that sums up the power and purpose of processing Alikes and medical records:

“We need to use real-world data, which is the patient-level data not collected in conventional randomized clinical trials, and it includes a lot of the data we know is being collected as we’re delivering care. If we apply the right analytics to those data, we can derive the insights that we need in order to drive our organization by coming up with new real-world based evidence,” Marroquin said.

Is It Legal?

To quote from Alike Health’s website on why such analysis is available only now:

“You may not know it, but the government recently took a major step forward. A new regulation was introduced that makes it possible for everyone to gain instant electronic access to their personal health records.

This access could not have come at a better time, as advances in data science and artificial intelligence allow us to derive an Alike Similarity Score (Alike SimScore™) from your medical records. Your score – and the score of others – becomes the basis of our ability to match you to your medical mates, what we call your Alikes.”

You can read more about how Alike Health protects your privacy here.

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See how others are clinically Alike to you on the Alike Health app.

Explore your medical records clearly on the Alike Health app.

Use the Alike Health app to understand your clinical data and medical records better.

Patient & Healthcare Professional Community

Communities and support groups are the lifeblood for chronic illness patients. There is no one else, and I repeat, no one else that understands a chronic illness person’s pain and problems apart from other chronic illness patients themselves.

I am not saying this to sound like we are some morbid, elitist group of people. But I’ve come to realise over the years that even friends and family – no matter how much support they provide – are unable to comprehend what it’s like to live with pain every single day.

I have a few chronically ill friends whom I chat with online every day about chronic pain. These conversations provide us with emotional, mental and moral support. These topics are complex ones that others aren’t able to relate to, no matter how empathetic they may be.

What if the People We Talk to are Almost Exactly Like Us?

Now imagine if there were hundreds more of such people to talk to? This community exists on the Alike Health platform. On Alike Health, it isn’t only chronic illness people whom you will be talking to, but chronic illness people who are most like you.

Whilst I really love my chronic illness friends online, none of them understand much about Antiphospholipid Syndrome, which is one of my main medical diagnoses.

Facebook groups for this disorder also tend to veer towards pregnancy related topics, which is currently not on my radar. As a result I feel a little isolated on this front.

I often wish that I had a space where I could find more autoimmune disorder patients who are like me, not only in terms of diagnosis. But also age group, lifestyle, comorbidities, treatments, past experiences and future goals.

This aspect of Alike Health, as I see it, is their greatest asset and appeals to me a great deal.

The Important Combination of Wisdom & Knowledge

What I like about Alike Health as well is the emphasis on wisdom and not only knowledge. Life experiences are like warm blood coursing through the veins of cold, hard facts.

Many patients acquire such wisdom the hard way – from pain and even near-death encounters. I’ve nearly died four times myself, but each time I learn something new about my body.

I’ve learned to recognise when it’s okay to watch and wait, when to visit the A&E, when to step up and advocate for myself and more.

Beyond the physical, I’ve also become more self-aware on an emotional and mental level. Past experiences have taught me boundaries; when I can push my body, and when I need to retreat and regenerate.

This becomes second nature after a while. If you’re newly diagnosed, wisdom from other people with chronic illness can save you a lot of unnecessary pain. Seek out your ‘Alikes’ on Alike Health and connect with them.

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The Amazing Advances in Digital Healthcare - Get Started on the Alike Health App

In Conclusion

Healthcare systems are far from perfect, and probably won’t be for a long time to come. There is still so much we don’t know about the human body and chronic illness. As with many things in life, there is always room for improvement as well.

What we do have, however, is a lot of health data and patient experiences. Companies like Alike Health strive towards a better healthcare model. One that benefits both patients and healthcare providers alike (no pun intended).

Some things that can be improved within the healthcare system are accessibility, coordination, diversity in treatment options and most importantly, personalisation.

Once those conditions are improved, the collective wisdom of people who suffer from chronic illness can be leveraged.

It is vital that patients and healthcare providers come together to share their knowledge and wisdom. Aggregation of this information can perhaps result in meaningful solutions for better healthcare and more humane patient care.

Download the Alike Health app if you’d like to contribute your experiences, connect with ‘Alikes’, or discover potential healthcare solutions!

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    Sources:

  1. Gallestey, J. Bacallao (2020, February 20). Cluster analysis. Encyclopedia Britannica. https://www.britannica.com/topic/cluster-analysis
  2. Vizer L, Eschler J, Koo B, Ralston J, Pratt W, Munson S. “It’s Not Just Technology, It’s People”: Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management. J Med Internet Res 2019;21(4):e10830. URL: https://www.jmir.org/2019/4/e10830. DOI: 10.2196/10830
  3. Dougherty CJ. The excesses of individualism. For meaningful healthcare reform, the United States needs a renewed sense of community. Health Prog. 1992 Jan-Feb;73(1):22-8. PMID: 10115594.
  4. Portland State University. (2020, January 14). The wisdom of crowds: What smart cities can learn from a dead ox and live fish. ScienceDaily. Retrieved September 4, 2021 from www.sciencedaily.com/releases/2020/01/200114160010.htm
  5. Shraddha Pai, Gary D. Bader. Patient Similarity Networks for Precision Medicine. Journal of Molecular Biology. Volume 430, Issue 18, Part A. 2018. Pages 2924-2938. ISSN 0022-2836. https://doi.org/10.1016/j.jmb.2018.05.037. (https://www.sciencedirect.com/science/article/pii/S0022283618305321)
  6. Brown Sherry-Ann. “Patient Similarity: Emerging Concepts in Systems and Precision Medicine”. Frontiers in Physiology. Volume 7. 2016. Page 561. ISSN 1664-042X. DOI: 10.3389/fphys.2016.00561. (https://www.frontiersin.org/article/10.3389/fphys.2016.00561)
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7 comments

  • Avatar of Lisa Ehrman

    Thanks for sharing. This app sounds very helpful and I’ll be checking on it to see if it can help me.

  • Avatar of Despite Pain

    I love the sound of this, Sheryl.
    Other patients’ knowledge is often better than some medical information people receive. I have a few conditions too and am a member of several support groups. Very often, in the groups, people repeat what they’ve been told by their doctor and long-term members often have to tell them that the information is wrong. The input for people in the same situation is invaluable. And like you said, people who live with the same condition as us are the only ones who can really understand. But this app isn’t just going to focus on one condition, but everything we live with. I find this quite exciting. I love to hear about technology being able to help people with chronic illnesses and this sounds like it could do just that.

  • Avatar of Melissa Reynolds

    This app sounds really useful especially as a chronic illness sufferer for whom doctors don’t tend to have much to suggest. Our best hope is learning from other patients with similar experience. Thanks for the comprehensive review so I can check it out!

  • Avatar of Alison Hayes

    This app sounds very interesting – I’ve downloaded it to check out. It crashed when I started filling out my info, but their support team reached out to me to ask why I stopped partway through onboarding, which was nice.

    The idea of the wisdom of crowds in aggregate is also one I truly enjoyed reading about, and their multidimensional mapping of ‘alike’ scores sounds much better than the simpler work many other programs do.

    I’m excited to check it out!

    • Avatar of Sheryl Chan

      Thank you Alison! It does sound exciting doesn’t it with the cluster analysis and algorithms? It can only improve as time goes on I believe 🙂 I hope you meet some wonderful matches who are Alike!

  • Avatar of Lucy

    This app sounds brilliant and it sounds like it’s already gaining great popularity. It’s so true, everyone is so unique and while it’s great that everyone shares their specific treatments, diets etc that helps them, it can be overwhelming knowing which ones will suit you best. Connecting with people who are so similar clinically using the alike health app will make this process a lot easier. Thank you for sharing about the app, I’ve never heard of it before and it definitely could be a massive benefit to so many with chronic illness and pain.

    • Avatar of Sheryl Chan

      You’re welcome Lucy, am glad you found this post and the app helpful! Let’s hope the userbase grows – only good things can come out of that 🙂

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