science

PatientsLikeMe

PatientsLikeMe is a science topic covered in the lgStudy science library. This page brings together a partial reference excerpt, illustrations, worked examples, real-world applications and a short study plan, so you can understand PatientsLikeMe rather than just read about it. In short: PatientsLikeMe (PLM) is a health management and social networking website. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy.

Key takeaways

PatientsLikeMe belongs to science; place it in that map before memorising details.
Learn the definition first, then one example that makes the definition concrete.
Connect PatientsLikeMe to a quantity you can measure, compute or draw — that is where exam questions come from.
Reproduce the core statement of PatientsLikeMe from memory before moving on to harder problems.

Reference excerpt

PatientsLikeMe (PLM) is a health management and social networking website. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy. Data generated by patients themselves are collected and quantified with the goal of providing an environment for peer support and learning. These data capture the influences of different lifestyle choices, socio-demographics, conditions and treatments on a person's health.

History PatientsLikeMe was inspired by the life experiences of Stephen Heywood, diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. The company was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole. After being diagnosed with ALS, Stephen's family founded a non-profit, ALS Therapy Development Institute, in an attempt to slow his disease and treat his symptoms. However, the slow pace of research and the trial-and-error approach was time-consuming and repetitive. They realized that Stephen's experience was like that of other patients around the world who often have specific questions about their treatment options, and what to expect. PatientsLikeMe was created to help patients connect with others who know firsthand what they are going through to share advice and resources. The platform provides health profiles with clinical reporting tools where members can document symptoms, track treatments, and monitor side effects. Users can view aggregated health data from other members with the same condition. Members use forums, private messages, and profile comments to communicate with other users. In 2017, PatientsLikeMe entered into a partnership with iCarbonX to apply next-generation biological measures and machine learning to understand more about the basis of human health and disease. iCarbonX, founded in 2015 by genomicist Jun Wang, took an equity position in PatientsLikeMe and provided multi-omics characterization services to the company. In 2019, PatientsLikeMe was acquired by UnitedHealth Group after being forced by the United States government to divest their investment by iCarbonX. Unitedhealth Group and PatientsLikeMe made plans to help patients with similar health concerns connect to share experiences. In 2020, PatientsLikeMe began to operate as an independent company backed by Optum Ventures, a UnitedHealth Group affiliate.

Expansion beyond ALS PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding other communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy, organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). The company's approach was to read the scientific literature and listen to patients to identify outcome measures, symptoms, and treatments that were important to patients and could be accurately reported. For example, the development of the MS community involved the development of a new patient reported outcome measure, the MS Rating Scale (MSRS), to ensure patients could accurately determine how their condition was progressing over time. However, building one community at a time was a slow process and the company risked being overly narrow in focus while excluding more than 5,000 patients who had requested new communities as of December 2010. In April 2011, the company expanded its scope and opened its doors to any patient with any condition. Today the website covers more than 2,900 health conditions, with new members joining daily from the US and other countries around the world. Of note are the nearly 14,000 ALS members, who have helped make PatientsLikeMe's flagship community the largest online population of ALS patients in the world. In the United States, approximately 10 percent of newly diagnosed ALS patients register on the site each month, and 2 percent of all multiple sclerosis patients in the US participate in the community.

Products and services

… excerpt ends here. Continue reading the full article.

Illustrations

Stephen Heywood's profile on PatientsLikeMe

Worked examples

Example 1 — a first encounter with PatientsLikeMe

Start with the simplest possible case. Write down what PatientsLikeMe claims or describes in one sentence, then invent the smallest concrete situation in which that sentence is true. In science, the smallest case is usually a single object, a single equation or a single measurement. Check that every symbol or term in your sentence has a meaning in that case.

Example 2 — changing one variable

Take the situation from Example 1 and change exactly one quantity: double it, halve it, or set it to zero. Predict what should happen to PatientsLikeMe before you calculate. Comparing your prediction with the result is the fastest way to find out whether you understand the idea or only the words.

Example 3 — an exam-style question

Typical questions about PatientsLikeMe ask you to (a) state it precisely, (b) apply it to given data, and (c) explain a limitation. Practise writing all three answers in under five minutes; the third part is what separates a full-mark answer from an average one.

Applications of PatientsLikeMe

In research: PatientsLikeMe appears in science research whenever the underlying quantities have to be modelled precisely. Papers usually cite it as a starting assumption and then explore where it breaks down.
In technology and industry: Engineering practice reuses PatientsLikeMe in design rules, simulations and safety margins. Knowing the idea lets you read a specification sheet and understand why the numbers look the way they do.
In the classroom: PatientsLikeMe is common in secondary-school and first-year university syllabi. It links to neighbouring topics 2019 mergers and acquisitions, American medical websites, Companies based in Cambridge, Massachusetts, so understanding it makes those chapters shorter.
In everyday life: Look for PatientsLikeMe outside the textbook — in sport, cooking, traffic, electronics or the sky above you. An example you found yourself is remembered far longer than one you were given.

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How to study PatientsLikeMe in 20 minutes

Read the reference excerpt below once, without taking notes.
Close the page and write down what PatientsLikeMe means in your own words.
Compare your version with the excerpt and mark what you missed.
Work through the three examples above with pen and paper.
Explain PatientsLikeMe out loud to somebody else — or to Teacher Smith in the lgStudy chat.

Frequently asked questions

What is PatientsLikeMe in simple terms?

Why does PatientsLikeMe matter?

Because it connects several science ideas at once: it gives you a definition you can apply, a quantity you can calculate, and a way to check whether a result is plausible.

How should I study PatientsLikeMe?

Read the excerpt, restate it from memory, then work through the examples and applications listed on this page. The five-step study plan above takes about twenty minutes.

What does this page cover?

It gives you a compact reference excerpt plus original lgStudy explanations, examples, applications and study material on PatientsLikeMe.