Guest Column | July 23, 2015

The Crowd Will See You Now: How Do-It-Yourself Healthcare Will Make The World A Better Place…Someday

The Crowd Will See You Now: How Do-It-Yourself Healthcare Will Make The World A Better Place…Someday

By Derek Hennecke, CEO and president, Xcelience

We live in an era of convenience. We can, if we choose, grab dinner without leaving our cars, watch from the sofa as the the lawn service trims our hedges, wait for UPS to drop off our new clothes, and hang our dry cleaning outside the door for pick up. We live a life our grandparents only dreamed of. 

Or do we? If this is true, why am I still so busy with pesky little unpaid tasks all the time? Why do I have to fill up my own gas tank? Book my own travel? Check in my own suitcase and print my own airplane ticket? The truth is, we also live in the era of massive inconvenience. We live smack in the middle of the do-it-yourself revolution. Millions of little tasks that used to be done for us we now do ourselves.

The self-service era can be traced to 1916, when the Piggly Wiggly supermarket opened its first self-service grocery store. Until that time, customers ordered groceries from a man at a counter who collected and bagged them while they waited. Nowadays, if your supermarket has a self-checkout aisle, you may visit the store and never see an employee. In the future, hotels won’t need check-in staff.  Your hotel will send you a link, and you’ll open the door with a wave of your Apple Watch or phone.

Some of these self-service tricks save us time and/or money.  But many just fill our lives with dozens of new little tasks, from carrying our own suitcases at the hotel, to filing our own taxes, sorting our recycling, or waiting through endless automated checklists to get to a customer service rep.

In his new book, Shadow Work, Craig Lambert presents a disconsolate view of this growing quantity of jobs we do everyday.  Shadow work, according to Lambert, encompasses all those little daily tasks you aren’t paid for. His view is that there’s too much of it, and we’ve become too dehumanized.

With some reservations, I disagree. Given the choice, most of the inconveniences I take on I do willingly because they save me time or money. Much of Lambert’s book glorifies the way things were. While I recognize the appeal of the past, I think most of us wouldn’t go back to lining-up, waiting, and paying higher prices.  

Where I do agree with Lambert is on the side effects of the do-it-yourself society. As companies, the more we automate, the more faceless we become. Loyalty is something we accord to people, not gas pumps or web sites. As a CDMO, I am reminded that people need to bond with people. In Xcelience, the role of project manager (PM) is central to customer loyalty. Perhaps small biotech companies will end up having to bring in their own PMs to manage their CDMOs.

Do-It-Yourself Healthcare

Self-service can be taken to extremes, and in healthcare this can be worrisome. Dr. Google should never be your primary resource for anything beyond routine healthcare.

Self-service or democratized healthcare can lead to all kinds of misdiagnoses and can be abused by people with commercial interests or irrational beliefs, including homeopathy. And yet, there is most definitely a place for the Internet in this world. In 2006, I had a carotid artery dissection. And in 2006, I had a lot of questions. What caused this? Will it ever happen again? The three first-rate neurologists I saw were equally vague and uncertain. The medical community didn’t have enough data on survivors.

Enter the Internet, where we survivors found each other. In 2006, forums were less of a thing, but I stumbled on a forum for dissection survivors about five years ago, and within an hour, I knew that carotid dissections are almost always associated with a single incidence of excessive exertion, usually combined with undiagnosed high blood pressure – which I also had at the time – and that they almost never re-occur. Thank you, Crowd.

Patient advocacy groups are another great example of democratized healthcare at its best. In the old days, a parent whose daughter or son was diagnosed with a rare and relentlessly fatal disease like Friedreich’s Ataxia would have been alone and largely unable to do anything productive. Now he or she can join the Friedreich’s Ataxia Research Alliance and gain information, support, raise funds for research through a cross-country cycling race, organize the Energy Ball, and stay on top of the latest experimental drugs as they advance through the pipeline.

“The Crowd Will See You Now”

For better or for worse, we are all going to be practicing more and more of our own medicine.  There’s no stopping it. We have more control over our lives than ever now. We want to be co-pilots in our healthcare, not passengers, and the world is changing to make that possible.

Many of our doctor’s tools are well within our grasp. You can ask your doctor for a copy of your healthcare records. Lab Corp recently began allowing patients to order basic wellness blood test panels without a prescription. Your Apple Watch can be used to test your glucose, and as I wrote in a previous article, more biometrics are coming. This kind of data, used wisely, could help you spot and analyze trends and, working with your doctor, could lead to better diagnoses.

The FDA In A Do-It-Yourself World: 23andMe

For the FDA, tasked with “protecting and promoting your health”, the do-it-yourself revolution must be terrifying. The company 23andMe epitomizes this predicament. 23andMe is a do-it-yourself DNA testing company. Many of the results are basic – what your hair and eye color are, and whether you have curls or are prone to baldness. The results can spell out a person’s risk for gout, arthritis, and macular degeneration. And then there were the life-changing results: Parkinson’s Disease, Alzheimer’s, and BRCA cancer mutations.

Powerful stuff. This information could be a real wake up call for some people. If you learned that you were at a higher risk than average for cancer, you might make some dramatic changes to your lifestyle in order to improve your odds. You might take your annual physical more seriously, and perhaps discuss with your doctor the need for increased screenings. The problem is that some people may make choices that are more risky, as when someone with a higher than normal predisposition for BRCA cancer may opt for a double mastectomy. This is a major operation, especially for someone who may not ever develop the disease. Remember, a predisposition is not a diagnosis. The average population has a 5.6 percent chance of developing colorectal cancer; I have a 6.8 percent chance. That doesn’t mean I’ll get it. Odds are, I won’t get it at all.

Still, you can see why this kind of loose information would worry the FDA. Forums were popping up around 23andMe, and people were comparing results and using anecdotal evidence to advise each other on courses of action. The Alzheimer’s Society wrote, “If you are worried about your memory, your GP should be the first port of call – not a home DNA-testing kit.”

The FDA challenged 23andMe to prove that their results were accurate, and 23andMe failed to persuade the agency. In November of 2013, the FDA ruled that the 23andMe home test kit determines medical risk and hence is a medical device, which requires regulatory approval.

In the U.S., 23andMe has been reduced to providing DNA testing to help people trace their ancestry. Interestingly, though, the full home health kits are still available in Canada, Denmark, Sweden, Ireland, and Finland and as of December 2014, in the U.K.

Finding Balance

A very good friend of mine is a psychiatrist with 50 years of practice specializing in schizophrenia. About four times a month, he tells me, he gets a patient who insists with great conviction that he or she knows how to treat him or herself. The patient has read about his or her condition on the Internet, and would the good doctor kindly (or not so kindly) write the appropriate prescription? This is a relatively recent phenomenon in his career, as you can imagine. My psychiatrist friend is not at all averse to marrying technology to his practice for optimal treatment results. He strongly encourages patients to research their diagnosed conditions on appropriate websites, and he welcomes discussion. But when web or forum advice conflicts, it seems a little ridiculous that patients are willing to toss aside 50 years of experience and 50 annual hours of continuing education and go with the lessons gleaned from a couple of evenings spent on the Internet.

Whenever a major societal change comes along, we as a society have to go through a painful learning curve before we develop some common sense rules. Over time, we will learn how to take control of the information that is available to us and use it to best advantage. I don’t think we’ll ever become our own doctors. But we will become much, much better patients, taking an active role in gathering information and trends about our own health and thereby equipping our doctors to make more accurate diagnoses and better tailored treatment plans.