What should patients know about their disease?

A recent survey by the Dana-Farber Cancer Institute showed that many women who had surgery for their breast cancer did not know basic facts about their own tumour, such as their HER2 status, their ER status, their tumour stage and grade. @DanaFarber

The lead author of the study, Dr. Rachel Freedman, expressed surprise and concern at these results.

http://www.dana-farber.org/Newsroom/News-Releases/many-women-lack-basic-understanding-of-their-breast-cancer-study-finds.aspx

Why should patients know or care about these things? I have been immersed in the field of healthcare and pharmaceutical market research for more than ten years, but when it comes to my own health, I find I am not really interested in learning about the intricate details of my ailments.

Professionally, I often talk with physicians who make treatment decisions on life-threatening diseases and marketing executives from pharmaceutical companies who promote therapies to treat these diseases. Both of these groups focus a great deal on the minute differences between this drug and that, between different genetic mutations and cellular targets and markers that guide therapy choices. This knowledge is essential to their livelihood and their job. Should it be essential for patients as well?

Let’s draw an analogy to other areas of life.

When my car breaks down I bring it to the mechanic. What I am most interested in is: A) How serious is it? B) Is it fixable? C) How much will it cost to fix it and how much time will it take? I believe the mechanic to have all the knowledge about the different parts in my car and the tools that are needed to fix them, should they break down. I trust my mechanic to give me an honest assessment of the damage and the different options for repairing it (yes, I have an honest one). I don’t need to know anything else. Why should it be different for medicine?

DSC_0651

Or here’s another one:

When I decide whether to buy an Apple smartwatch or a Samsung Gear, I base my decision on things like what apps they offer, how the screen is laid out and which smart gestures they support. How the people at Apple or Samsung get the watch to have these features is irrelevant for me. All I care about is what I can and cannot do with the watch. And whether it looks cool. And how much it costs.

Samsung Gear S

And now back to medicine:

Is it fixable or will I die (soon)? How long do I need to take this therapy for? Will it make me nauseous? Does my insurance cover it? Will it prolong my life? How much of a hassle is it to take it? These are the types of questions that are relevant for a patient.

That’s hard to understand for someone who is focused on the science of medicine. But healthcare is more than science. Extending someone’s life or halting disease progression are only surrogate endpoints. The real endpoints are enabling patients to lead the life that they want, how they want it. These endpoints are, of course, immeasurable.

Confessions of a First Time Wearables User

Since I started my business in healthcare-focused market research, I have been paying attention to wearable devices. Wearables devices have great potential for monitoring health parameters and improving care for certain chronic conditions.

The business press has been making a big deal of wearable devices, predicting exponential market growth over the next few years.

Wearables market growth

I am interested in the user perspective – how useful are these devices, actually? Some statistics show that, similar to fitness club memberships, many people who purchase fitness tracking wrist bands abandon them after a few months of usage.

As an anthropologist, I believe the best way to learn about a certain area of life is to immerse yourself in it, to experience what it feels like and to understand how it works. So I started going to these meet-ups for people engaged in the world of wearable devices. They are awesome!

Run in Steve-Jobs-style corporate presentations by the inspiring wearables guru Tom Emrich, companies in the wearables space present their prototypes and the audience gets to try stuff out in the post-presentation mix-and-mingle. My favorite so far has been the mind-controlled beer tap.

I have met many people in the wearables community, and they are certainly very different in style and outlook to my usual clientele (executives from pharma companies). However, I have hesitated to take the plunge into trying a wearable myself.

I am a pretty fit person, working out two to three times a week, to maintain my health and my sanity, eating pretty healthy, and most of the time walking to public transit rather than taking the car. Whether I run 5 minutes less today than I did last week is not really important to me, as long as I get some exercise every few days. Competing with others along fitness goals does not interest me at all. But I realized that not trying out a wearable myself would deprive me of certain insights that could be essential for conducting the user research that I am so interested in doing.

So I bought a Garmin Vivofit last week. Three things enticed me to purchase this device rather than some of the other ones that are very popular (Jawbone Up, Fitbit, Fuelband).

  1. It shows the time. I am of a generation that still wears a wrist watch, and wearing both a fitness wrist band and a watch separately seemed silly.
  2. Its battery life is supposed to be one year. Charging devices is a big pain, and in my household we are competing for outlets and charger cables to charge the various cell phones, iPods etc for the next morning.
  3. It has a red progress bar that shows up after you have been sitting around for too long. My occupation requires a lot of sitting in front of the computer. I tend to get into a state where I push myself to concentrate only half an hour longer, then another, then another, and then become all tense because I have not taken enough breaks. So a little nudge to get up and walk around seemed like a very useful feature to me.

Garmin Progress Bar

Here are my first experiences with the device:

  • Putting it on is quite uncomfortable. You have to press down on this clip to go into these holes, and doing that hurts the inside of my wrist. Watch wristband makers have certainly figured that one out better. Maybe if you are a tough man you don’t mind. But I’m a lady.
  • The red progress bar is very useful. It has actually helped me take more frequent breaks when I am doing computer work, and I feel better after getting up and walking around for a few minutes.
  • The red progress bar is dumb. This so-called smart device apparently registers only walking activity, i.e. when I swing my left arm back and forth. I was frustrated to see the red bar show up after I spent an hour in the kitchen preparing dinner, and after I was in the back yard, raking and bagging leaves. Apparently, either the sensor or the algorithm don’t realize that these are physical activities.
  • The red progress bar can be fooled. Just for fun, I tried out swinging my arm back and forth for a minute while I was sitting at the dinner table, and it actually tricked the device into registering this as physical activity, so the red bar disappeared.
  • The dashboard that shows my steps and my sleep is kind of interesting. I have only worn the device for a few days, so can’t say yet how useful this data is going to be long-term, if at all, but it’s neat to look at in a narcissistic way – the same way I look at my Twitter account from time to time and delight in the fact that I actually have some followers.

Anyway, it has been a very interesting experiment so far, and definitely proof of the value of ‘walking in the shoes of’ to really understand something.

The true potential of wearables is difficult to tell at the moment. There could be all sorts of useful applications that have not yet been developed or that have not yet gained broad acceptance. After a lot of enthusiasm in the media, there seems to be a bit of a backlash now.

Here’s a recent page from The Atlantic, with quotes of tech opinion leaders all questioning the enthusiasm for wearables:

Atlantic article

And here’s an article written by a health IT consultant about the more technical challenges of integrating mobile health monitoring devices into electronic medical records.

http://medicalconnectivity.com/2014/11/04/challenges-using-patient-generated-data-for-patient-care/

While I share some of the skepticism, the wearables space is certainly an area worth watching, and with great growth opportunities for companies who ‘get it right’. I am excited to be part of this journey.

Doing Business on a Global Scale

Today, it was reported that “Chinese court finds GlaxoSmithKline guilty of bribery”. This raises the question: Is the Chinese government really cleaning up? Or did they just not bribe the right people? Why is GSK in the spotlight and not others?

Having lived and worked in Russia, and frequently discussing their country’s state of affairs with friends from Columbia, Iran, China and India*, bribery and favouritism seems to be a fact of life in a number of countries including BRIC and the Middle East.

Most people here in Canada and presumably also in the US would agree that bribery is bad. In fact, the US has very strict laws forbidding US businesses to engage in such practices abroad. I agree that one should uphold one’s moral standards in contexts which challenge them.

But I’d like to add a word or two to explain why bribery is so rampant in some countries. It is not a lack of business ethics, as one might suspect, but rather a reaction to the conditions under which businesses have to operate in these countries. What is really lacking there is the rule of law.

For someone who has lived in the ‘West’ all their lives, it is difficult to image what the absence of rule of law looks like, and what it does to you. Imagine business where you sign contracts but you cannot enforce them. Where you accumulate wealth, but where it can be taken from you at any time. Where you apply to the authorities – police, judges, lawmakers – for help, but they do not serve you. All and everything you do, your success and failure is dependent upon knowing the right people, forging the right alliances, and often money changes hands. If you run a profitable business, others want a piece of the pie, or they won’t let you do your work.

If you make the wrong move, if you get in the way of someone more powerful than you, then you go down – accused of bribery, tax fraud, unsanitary working conditions etc. etc. Maybe you are guilty, maybe you are not. If you are lucky, you can pay your way out of it. Otherwise, you may end up in jail like Mr. Khodorkovsky, or worse.

Yes, people pay bribes and they should not be doing that. Yes, people defraud on their taxes and they should not be doing that. Yes, people let their employees work in unhealthy and unsafe conditions and they should not be doing that.

However, those that get singled out and publicly blamed for their wrongdoing are not necessarily the worst culprits. They are simply the ones who did not play their cards right, who ticked someone off. So how did Glaxo get into this mess?

* Thanks to Toronto’s multicultural community!

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Man vs Machine

So, Big Data. The market research industry continues to struggle with the concept. It was one of the buzzwords of 2013. Some have come up with a big data offering. Some are searching for a point of view on it. Some counter with small data. Many still have only a vague sense of what we are talking about.

I have asked many colleagues and clients what this concept means to them, in the hopes of developing a brilliant solution that would make me wildly successful. Well, this seems to be taking some time, but anyway, I’d like to share with you what I have learned so far. As I am working in the healthcare sector, this is my focus below.

1. Big Data (in Pharma) is IMS data

For some of my pharmaceutical clients, all they can think of when asked about large data sets is IMS data. IMS captures and sells information about the prescribing behaviour of physicians at the pharmacy level. Through this data, pharmaceutical companies track the sales of their products.

2. Big Data (in Hospitals) is Patient Records and Interaction Statistics

Healthcare providers, particularly hospitals and other large organizations, capture myriads of data on patients flowing through the system. The analysis of this data is largely off the radar screen of traditional market research, and falls under the discipline of health informatics.

3. Big Data is Social Media data

This is a view that many market researchers adopted when social media first appeared on our professional horizon as another form of human expression. Last year’s MRIA NET Gain conference, dedicated to big data, featured a number of presentations in this area.

For those who do not want to develop their own proprietary solutions, subscription-based social media analysis tools are available and used by both end clients and market research vendors.

4. Big Data analysis is a different way of saying Data Mining

Some sectors have worked with large data sets for some time. I am thinking of scanner data in retail, and loyalty programs (Air Miles, Petro Points etc.). Fifteen or so years ago, the statistical techniques used to sift through such data sets were called ‘data mining’.

This practice is still ongoing, and the size of data sets ever increasing with more and more customer touch points being added. Some think of this type of analysis, when hearing the words big data.

5. Big Data is Data that is created by Machines

This type of big data is rarely mentioned and obviously not in the forefront of a market researcher’s mind. However, it has grown exponentially and is increasingly viewed and used as a source of customer information.

For market researchers, the question (and the fear) is to what extent human analysts are still needed, and to what extent ‘the machine’ can do it on its own. And how we can make sure we are still needed.

We say: “You need an expert to interpret what your data means.” We say: “A consultant is needed to guide the analysis process.” We say: “Meaningful data analysis is the development and testing of hypotheses, and only people can come up with those.”

And we are right.

How many times have I looked at the results of a statistical analysis and said, “This does not make any sense.” And then we discarded the analysis and started fresh, because results need to make sense. To another human. To your client. They need to lead to actionable insights and recommendations.

So we are still needed. But…

But many, many processes are now automated, from data analysis over producing charts even to highlighting key insights in charts. Far fewer people are needed to work with the data then before. Take a look at www.beyondcore.com – will get you thinking.

Some companies function with very little market research, in the sense of interactions between real live researchers with real live respondents. Machine-generated user data that streams back from devices guides the refinement of these products. New Apps are developed by split testing and seeing how early users interact with certain features, following the logic of clicks. Service companies integrate their customer interface and CRM software with their enterprise management system. Automated cues let managers at different levels know how they are performing, and notify them if there is a problem.

Technical skills are essential for survival. How can you tell a successful agency these days? If you look at their ‘careers’ page, most of the open positions are for developers (i.e. IT people). Those who win in providing business intelligence are either companies who are focused on the digitalization and automation of data collection and analysis, or companies who make intelligent use of available software products and platforms within the research process.

Do you know what Hadoop is? A wireframe? CSS? If not, perhaps it is time to google it right now…

Man vs Machine

 

The Right to Choose

Recently, the CBC reported on a ten-year old girl, Makayla Sault, who was diagnosed with acute lymphoblastic leukemia, a cancer of the blood. The girl experienced severe side effects from the chemotherapy she was receiving and decided, together with her parents, to discontinue therapy.

Now, the Children’s Aid Society is getting involved with the intent of convincing the family to complete the course of therapy. The parents and the community they live in also fear that Makayla may be forcibly removed from home and given therapy against her will.

Do parents have the right to choose whether or not a potentially life-saving treatment is given to their child? Does the child have a say in this decision? Does the state have the responsibility to act in what is perceived as the best interest of the child, against the parents’ and the child’s wishes?

Let’s consider all the factors.

Deadliness of the disease. The form of leukemia that Makayla has can progress very rapidly and lead to death within a few months, if not treated. If it was a slower progressing disease, would it seem reasonable to let the parents decide on the course of treatment?

Chance of cure. If treated, there is a high chance of long-term remission or cure for a patient with acute lymphoblastic leukemia. Some quote the likelihood of treatment success as 75% or even higher. How does this information influence your view on the case? Does the parents’ decision seem responsible? Should the state step in?

What if treatment success was estimated at 50%? …at 30%? …at 10%? How would this influence your view on whose right it is to decide what to do? With a low chance of remission or cure, would it seem reasonable to allow parents to, basically, let their child die without having to go through the agony of chemotherapy?

Cultural context. The news coverage focused in on the point that Makayla and her parents belong to the New Credit First Nation, based in Ontario. Her family decided to try traditional remedies instead chemotherapy, and their local community has shown great support for their decision. The interference of the Children’s Aid Society is seen by some as another attempt of a government agency to take away native children, as had been done during the era of forced residential schooling.

How does the cultural factor influence your view on the case? Does being First Nation give Makayla’s parents more of a right to decide her destiny than being of Irish decent, being Jewish or being Iranian? What if the family belonged to a religious group that was viewed as being ‘extremist’? Would you feel the same about the case or different?

To what extent is the state responsible for the well-being of our children, and to ensure their well-being in the face of parental opposition? Laws and mechanisms to protect children against abusive parents certainly seem appropriate. How about protecting children against well-meaning but ill-informed parents? How about protecting children against well-meaning, well-informed parents who adhere to a different belief system? Difficult decisions.

Old World, New World

This is not about market research. When I woke up last night I had a vivid memory of standing outside a door in an apartment building in Germany. There was the door, thickly painted wood, and the doorbell that I was about to ring. The stone floor cold under my feet, grayish-white speckled, sort of like marble, but definitely much harder than marble. Quiet, cool air in the house, and faint noises from playing children in the courtyard. A few steps down, a landing with an old double window. The window sill about 50 centimetres wide, it had some potted plants of the durable, all-season nature.

So many times I have been to places like this, stood outside of apartment doors, slightly apprehensive. The setting evokes a range of associations. The building as a microcosm. People have lived together for many years. Someone lovingly waters those plants, and dusts them off every once in a while. The floor is kept spotless, and I am sure there is a schedule posted somewhere, that tells which party is responsible for cleaning which week.

Corridor German House

A place of comfort. A place of confinement. Long-standing relationships, set ways, ancient enemies. There probably is a lady on the third floor who bangs a broomstick against her ceiling every time the family above her is audible. The couple on the ground floor always gripes about people not cleaning off their shoes properly and trudging dirt through the house. When kids talk loudly on the steps, someone will stick their head out their door with a disapproving look.

 

Fast forward to Toronto, Canada. First of all, a lot of people here own their own home. And not just rich people. Many single-family dwellings are not more than ten, twenty years old. My house was built in the 1940ies and is considered ‘old’. Having your own house means a lot of things. It means making as much noise (inside) as you want. Children jumping down the stairs, jelling, turning your music up. There are no rules to follow (well, very few), no customs to adhere to. Wear what you want, talk however you want, cook whatever you want. You are free to strike new relationships, don’t have to follow ‘what is proper’. What is proper and acceptable is negotiated every single day as people of different cultural backgrounds mingle and co-exist. Make no assumptions about others – speak to them and see what they are all about.

Townhouse Canada

This place is new, feels new. The depth is lacking, the ties woven through centuries (unless you go into small towns and more traditional parts of the country). It is a country full of opportunities. You have a good idea, you can get things done, we can benefit from it, you’re in. Don’t worry if your email contains grammatical errors, if you speak with an accent. Here in Toronto, most people are from somewhere else.

Your house is a blank slate. Make of it what you want.

Disclaimer:

I realize that I am writing this from a particular vantage point (as one usually does!). In Canada, there are many people who do not have the same opportunities as they have been open to me. If you arrive without language skills (English / French), without family connections and without financial backing, getting a foothold and making use of opportunities can be tough. However, I argue that the opportunities here are still greater than if you were to arrive in Germany with the same skill set and resources.

Conclusion:

Germany and Canada, both sets of circumstances can breed great things. Born out of the freedom to dream large or out of the necessity to come up with creative solutions in confined circumstances. Good luck to you all!

On Chemotherapy

My friend had breast cancer twenty years ago. After surgery and radiation, she has been in remission and free of health complaints. Now that she is almost 80 years old, another lump was found in the same breast. She has access to excellent medical care, and she was given the following advice:

While the lump was small, she should have a mastectomy, just in case. As she was not eligible for another round of radiation therapy, it was recommended that she go through chemotherapy, because physiologically, she was deemed to be perhaps ten years younger than her actual age.

This is typical advice to elderly adults who are in good physical shape. It is based on the assumption that adding years to your life trumps every other consideration, provided you are in good health otherwise.

At age 80, how long does the average person have to live? Two years, five years, ten years tops? With all advances in medicine, we have not managed to extend life much beyond that. We are getting more and more people to reach their eighties, but we are not living significantly longer than that.

My friend was struggling with the advice she was given, and what was presented to her as the best medical solution. She did not want to lose her breast, and she did not want to put up with the side effects of chemotherapy. So she tried hard to find second and third opinions to support the view that it was not absolutely necessary to conduct a mastectomy and chemotherapy, and that she was not carelessly jeopardizing her chances of survival by refusing these options.

As we spoke about the different considerations that come into play in these decisions, she kept saying “I will get chemotherapy if I have to, but I’d rather not”. To me, this indicated an obligation that she felt to justify her choices to her friends and family, and perhaps to her medical advisors. Nobody wants to be seen as reckless with regard to one’s own health.

However, isn’t that bizarre and plain wrong? A person’s life is a person’s life, and having a lump in your breast is just one of many things you will consider and care about. So a woman who has carried two breasts through her entire life wants her life to end with both of them in place. So a woman who may have five, six or seven more years to live, probably deteriorating progressively as she ages, does not want to ruin her sense of well-being right now with an aggressive therapy regimen. So what?

Why is she made to feel guilty or irresponsible? Why does she need to justify her course of action?

It is understandable that friends and family of a person in this situation may advocate the more aggressive therapy, as they may fear losing this person. Fair enough.

However, it is my view that medical professionals should state very clearly that the choice is entirely up to the patient, that every choice has its trade-offs and that an informed choice, whatever it is, represents a responsible and acceptable way of managing one’s health. To have this sort of back-up from the medical community would make dealing with a difficult situation easier for the patient.

The Role of Motivation in Patient Engagement

As Dave Chase @chasedave recently stated The most important medical instrument is communication, and Patient Engagement is the Blockbuster ‘drug’ of the century. The idea is that by engaging patients to become more proactively involved in the management of their own health, better outcomes can be achieved, and generally at a lower cost to the healthcare system (compared to expensive tests, procedures and medicines).

New technologies make it easier to engage patients – for example via online portals, health apps, personal electronic health records, portable monitoring devices or a clever combination of these tools within a new care model. Clearly, when the generation of texting, tweeting, vining, instagraming twenty-year olds turns fifty and start their decent into chronic illness, resistance to digital, mobile, sharable health tracking and communications technology will no longer be an issue.

Remains the issue of motivation. The people who continue to supersize their burgers and fries, do they lack awareness of the health impacts of excess weight? The schizophrenic who skips her pill because it makes her head feel fuzzy, has she not been educated on the dangers of messing with her medication regimen? Will improved communication with a healthcare provider convince my uncle to stop smoking?

Yes, there are those who suffer from inertia, who are uncertain about the right way forward or who find it hard to fit taking care of themselves into their busy days. These patients will find it helpful to be supplied with tools and supportive healthcare providers who make it easier for them to look after their own health. These patients are the low-hanging fruit for the new care models.

And then there are other people. People who will not download the app. Who will not sign up for the e-newsletter. Who do not want to be called by their pharmacy to remind them to refill their prescription. Some people will continue to do dangerous, unhealthy things because they want to. It makes them feel good, at least momentarily. Some do not want to face the realities of getting older, of their failing bodies, loss of beauty and loss of agility. Some are comfortable with the thought that this is all inevitable, and do not feel inclined to take action. Some are looking to their doctor for the quick fix, just make it go away, I don’t want to bother with it.

PtEngageUSED

Motivating people is a tricky business and tech tools are only going to do part of the work. What motivates patients to take care of themselves? Pain? The desire to live longer? A feeling of obligation? Because your mom told you to? Peer pressure? Because it is cool? Fun? Because it makes you look better?

Also, doesn’t motivation change over the course of one’s life? What motivates a twenty-five year old to track his weight loss with a health app and what motivates a seventy-year old to continue his androgen deprivation therapy would likely be very different things. Capturing the Show Me The Way segment of patients with new patient engagement tools will be easy and rewarding. Addressing the Maybe Later and the No Way segments will be much tougher, and cracking the motivation nut will be essential to make it work.