Big data for Lou Gehrig’s disease, MS, HIV, fibromyalgia — from patients themselves: Fellows Friday with Paul Wicks

TED Fellow Paul Wicks is changing the way patients with chronic health conditions connect with one another, and how they participate in research. Trained as a neuropsychologist — and specializing in amyotrophic lateral sclerosis (ALS) and Parkinson’s disease — Paul began using the internet in 2002 to bring together communities of patients with life-changing illnesses. He tells us about how he came to run research and development at PatientsLikeMe, an online network that helps patients learn about their disease, track their health, connect with others and contribute data to science.

Can you tell me more about ALS?

Amyotrophic lateral sclerosis — which is also known as motor neurone disease and Lou Gehrig’s disease — is a rare neurological condition that affects between one and three people out of every hundred thousand. The neurons in the brain and spinal cord wither and die, leading to weakness, muscle wasting and stiffness. Tragically, people lose the ability to walk, to speak and eventually to breathe. Unfortunately most people only survive between two and five years with ALS — it’s rapidly fatal. The breathing muscles deteriorate and people lose the ability to expel carbon monoxide and they become more vulnerable to infections like pneumonia. It’s a terrible disease.

What is your background, and how did you get involved with this disease?

I am a neuropsychologist by training. I studied psychology at Durham for undergraduate and then did my Ph.D. at the Institute of Psychiatry at King’s College, London, where my thesis was about cognitive changes that occur in people with ALS. People had long thought ALS only affected the motor neurons that control muscles that allow arm movement, breathing, speech, swallowing and walking, but they thought that the brain was always left intact. When we think of ALS, we often think of people like Stephen Hawking, who is physically very disabled because of the condition, but who still retains his brilliant mind. He is an also an unusual example because he has lived so long with this disease.

However, over the past few decades caregivers had been reporting that some patients seemed to be having personality changes. People who were previously mentally astute were having problems doing some things that had been easy before, like multi-tasking or balancing a check book. My thesis involved doing cognitive testing and neuroimaging using brain scanners to correlate changes in the brain with performance on tests like verbal fluency, where you have to name as many words as you can starting with a given letter within a set time limit. Our study found that a subset of people with ALS actually do have cognitive problems, particularly those who have some of the inherited forms of the disease. This research has helped to overturn a lot of myths about the disease and just recently a new genetic mutation was discovered (C9ORF72) that explains a lot of what we found.

ALSA Walk to Defeat ALS, 2011.

How did you go from clinical research to becoming involved with patient interaction?

Back in about 2002, well before social media was ever a buzzword, I heard about a research project called BUILD that was winding to a close. The project had created a website for the ALS patients seen at King’s College Hospital’s clinic to give feedback about how the service was doing. It included a message board-like forum, which was still being used by a few patients even though the project was coming to a close. My professor said, “Well, it seems a shame to shut this down. Can anyone take this over?” I said, “Sure, I know a bit about the internet. I’ll take it over.” I became a forum moderator. During the day, I’d go and see patients one-on-one in their homes for cognitive testing, and at night I’d see more patients online. In person I could see that they had lost the ability to speak or had a weak grip on a pen, and of course we were mostly talking about the tests. But online it felt like they could communicate much more easily; if they needed to take an hour to type a paragraph, they could, and they used assisted technology like eye blink machines or trackballs. Nowadays they use iPads with speech recognition, or eye tracking, even open source software that can track nose movements. Online they were talking about their hopes and fears, the little everyday struggles I couldn’t see for myself.

I also saw patients exchanging tips, such as how silk or satin pajamas made it easier to turn over in bed when your muscles are weak. In my day job I could only share that tip with one person a day, but online, hundreds or thousands of people could get the information.

And in the meantime, these patients are also dying. That must be very difficult.

It is. You’ll get a very close-knit nucleus of people exchanging information who also care about each other very much — then as they start becoming sick or dying one by one, the forums go quiet again. And then new people come in. Although there are some long-term survivors most people have the faster form, and so it seems to go in waves.

Do people take pause at joining a group where many people are going to die as you participate in it?

Not everybody wants to engage. Some people with ALS don’t want to know any more about it, and that’s fine. We call them “information avoiders.” Some people want to selectively problem solve, like find out from others what to do if you’re choking on water instead of waiting for the next available appointment to ask your doctor. Those are the “selective seekers.” Others can be quite positive and pragmatic — they want to know as much as they can and fight the disease on their own terms, those are called “active seekers.” They confront their mortality much earlier on. But it can be immensely hard, and people might change in their approach over time, and their caregiver might be in a different position from the patient too.

For me, I’ve been dealing with serious illness and terminal diseases for 10 years or so. So I have to have a certain amount of detachment. I’m obviously very sad when I hear about a patient I know who passes away, but if I broke down for each and every person — and I’ve known hundreds, perhaps even thousands — I couldn’t function. I feel like they’d want me to work harder for the next cohort of patients that are diagnosed today, not dwell on things I can’t control. That British stiff upper lip does come in handy sometimes.

The PatientsLikeMe profile for ALS patient Stephen Heywood, for whom the site was originally founded.

How did you hear about PatientsLikeMe?

Some American patients started using the Kings College Hospital forum, and I found about it through them. PatientsLikeMe was founded by a family affected by ALS — the Heywood family, Ben, Jamie and Stephen. Stephen was 29 when he was diagnosed with ALS, and when that happened was that, Jamie, determined to find a cure for Stephen, quit his job and founded a non-profit laboratory called the ALS Therapy Development Institute (ALSTDI). The lab tried stem cell transplants, chemotherapy, supplements, even experimental, wacky stuff like Chinese herbs for many years. Meanwhile, Stephen was still living with the disease. Ultimately they thought, what if Stephen’s experience could be shared online so other people could learn from it? And what if other people shared their experiences and that data could be aggregated to learn even more?

This became the basis of PatientsLikeMe. I asked if I could join, and when I looked around, I thought it was amazing. Not only were they crowd-sourcing treatments, conditions and symptoms, they were also relying on people with ALS to track their disease. So they’d given them a measure normally only reserved for doctors — a scale called ALS functional rating scale. It’s 12 questions that ask about speech, swallowing, walking and so on, that would indicate the severity of the disease and how it would likely progress. In the past, this score would be known by the doctor and clinical researchers like me, but not shared with the patient. It always pained me that I knew a patient had a rating of a 25 or a 36, but they didn’t. It was like secret knowledge. PatientsLikeMe put this information into patients’ hands and even provided predictive background curves to see which track a patient was on. With these curves, with only a few data points, you can tell if you have 10 years to live or 18 months, or less. That’s pretty useful information about how to plan the rest of your life.

I began working at PatientsLikeMe as a forum moderator and quickly wanted to build on the community because I thought it could help every kind of patient. It turned out that there wasn’t a suitable rating questionnaire like the ALS one in every disease, so we invented one for multiple sclerosis called the MS rating scale. There was a scale for Parkinson’s disease used in clinical trials called the UPDRS that we adapted. We created new forums and communities for people with HIV, fibromyalgia, mood disorders, and later for other rare diseases. Along the way we were building new outcome scales when we needed to, starting the business up of how we’re going to make money from this and also starting the research side up.

After I graduated and got married, we moved to Boston for three years. During that time I built up a whole team of researchers and thought about how to open the site to more conditions. People would write in saying, “Why haven’t you done breast cancer yet?” or “Why haven’t you done Niemann-Pick C?” or “Why haven’t you done Sanfilippo B?” The problem was it would just take too long to build them one at a time. Our challenge was to generalize the platform so that anybody with any condition could join, and people with multiple conditions could see information on all conditions. We opened to all conditions in 2011 and opened up the floodgates.

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