Jamie Heywood's HxD Keynote

One of the most powerful talks at HxD 2013, was from Jamie Heywood, co-founder of Patients Like Me. At a conference a couple years ago, one of Jamie's colleagues spoke about where the site was heading and the connection with medical research, inspiring me to sign up and track my health for a while. Having a chance to hear Jamie talk about how the site has evolved since 2011 and to hear him candidly share what he hates about the site was truly inspiring. His honesty was powerful.

Years ago, Patients Like Me began for Jamie's brother, an ALS patient. Overtime, the site became more general, focusing on more diseases, and ultimately, all diseases. By gathering regular, highly detailed feedback from patients over time, the site aims to measure condition severity and impact to support patients, clinicians, and researchers. Long-term, the possibilities are endless, but consider the impact of being able to predict what a patient will do, to decrease the time learning what works for a patient, and to help the next patient receive better care.

One problematic aspect of the Patients Like Me site is the treatment feature. Treatments aren't always medications, but users are asked medication-type questions. Imagine the user includes prayer as a treatment. Now the user is asked for the dosage. I went back into my account after the talk, and updated some information. Sure enough, I encountered this issue when I tried adding the use of a heating pad for how I treat migraines. Dosage = 1 heating pad? LOL

When the site was generalized to 1500 conditions, with the option to add new ones, they don't always match up to a site designed for ALS patients. The more the website added, the more the measuring, it became a hybrid failure between a clinical interview and a medical record. They expected the patient to know if something is a symptom or a condition.

"People spend hundreds of hours filling out the profile and we make it really, really hard."

One of the best points, "effective measurement requires extremely well done user experience."

Leadership, Leaning In, and Middle Management

I am reading Sheryl Sandberg’s book, Lean In, and though only through the first few pages, I’m overwhelmed with the sentiment that I’m reading about myself. No, I’m not an executive, nor am I famous, nor on the fast track to a C-level position, but the feeling of being a woman in a male-dominated business world resonates.

When I was very young, my mom would take me to the library regularly (something I now do with my daughter). My most vivid memory is looking through the selection of books I’ve brought home and my mom yanking out one in particular, saying, “You will not be reading this book.” It was a picture book of career options, with all the women portrayed as secretaries, nurses, and teachers, and men as pilots, business professionals, and construction workers.

My parents never put down any career ideas. They thought the idea of art school was awesome, never once asking, “How will you make money with an art degree?” They never said I couldn’t be a lawyer or doctor or president. When I wanted to fly F-14s, my dad didn’t mock me.

Still, I realize how I’ve held myself back for the internal reasons Sheryl Sandberg says are commonly felt by women.

A few weeks ago, a recruiter called. There is nothing unusual about hearing from recruiters, but this call was for a leadership position. In my mind, I thought, “Wow, what an amazing opportunity!” However, what came out of my mouth was, “What makes you think I would be good for this role? It’s a leadership position.” I suggested a couple of trusted male colleagues because I couldn’t think of a female colleague who was interested in leadership. Looking back, of course I can think of several women, but at that moment, what came to mind was, “Who are the most take-charge, outspoken evangelists in my field?” and only men came to mind. Total fail on my part.

Later, I shared this conversation (minus the male/female bit) with a colleague, thinking it was a joke that someone was calling me for a leadership job. His response was, “well, why not you?” I had a moment of clarity and began to draw on memories of wanting to drive the strategic vision of an organization, but always feeling pushed back. My response, “I haven’t even been a manager, officially speaking.” I was rationalizing at this point. My very wise colleague returned, “Do you really aspire to a career in middle management?”

 To be completely clear, I’m in no way saying men don’t deserve leadership positions or that either gender is better than the other. I have no problem with all men or all women in any field, a 50/50 balance, or something in between. I only care that the right people are in the right roles for the right reasons. If a woman is right for the job and wants that job, then why shouldn’t she then fight for that job? Perhaps, she shouldn’t have to fight for it, but we’re in a hard job market, so I believe it’s a fight, regardless of gender.

I’m also not knocking management. Truth is, I like management. I love mentoring and growing team skills, delegating and balancing work loads to both include the best people on each project, and make sure people are challenged and broadening their experience. The idea of budgets and time management is exciting. I like finance and spreadsheets. I like solving problems. So, I’m not saying a career in management is a bad thing. I just question whether it is a necessary step before a director-level role, which is inherently a completely different job, focused on the bigger picture, not people and project management.

Sheryl Sandberg wants to see more women in leadership roles, as do I. The problem I see is that at the contributor level, it is impossible to see a path into leadership. How have women in leadership actually found opportunities to connect with people in executive roles before becoming an executive themselves? In many large organizations, there is an invisible wall between leadership and the lower ranks. To reach the top, there are several touch points in between, often making it difficult to connect and make an impression on those who could make a difference in one’s career. This isn’t just a “woman problem,” it is bigger and incredibly challenging for anyone hoping to take on increasingly critical responsibilities but who hasn’t the connections to get the ball rolling.

In the meantime, I've started a Lean In circle with a small group of women in my area. This process helped me realize, I simply don't know many career-focused women where I live. Perhaps a start in finding a connection with leadership is to simply find a connection with other women.

Speaking at HxD 2013: My Patient Story

Today, I did something I never thought I would do. I shared a deeply personal story with a group of unfamiliar people at the Healthcare Experience Design Conference. I've spent three years, avoiding certain details of my post-cancer life, changing how I live, work, play, eat, and sleep to accommodate a challenging medical situation. Most people assume I work from home for my own convenience. I wouldn't call it "convenience." It's necessity.

My husband and sister helped me work out the final details of my presentation slides, the amazing folks at Mad*Pow kindly offered me this opportunity, my colleagues in UX and CFI at Mayo Clinic offered plenty of well wishes, my friends and family wished me luck, and even Simba the cat meowed his support. Thanks especially goes to Adam Connor, who really helped me feel like I can do this, when I had some last minute jitters, to Jason Hessing for cheering me on, and to my parents and sister for greeting me tonight with delicious roast beef sandwiches from Kelly's. Because of all the awesome people around me, I walked on stage with no fear and I felt empowered.

There was something freeing about today. I just feel better, emotionally.

I'm exhausted and have an early flight, so a conference summary must wait. But for tonight, I'm grateful for the chance to share my story. I never knew how much I needed to get it out.

If you missed the talk, I'm sure Mad*Pow will have videos posted to the conference website soon. In the meantime, you can flip through my slides online.

What Happened Today?

Lately, life is going a mile a minute. Each Friday morning, as I add billable hours to my timesheet, I struggle to remember what it is I actually did all week. I know I worked on several projects, some personal-professional initiatives, attended meetings, drafted plans, and spent a lot of time typing up notes but week after week, I can't describe what I've really accomplished. This isn't how life always is, it's just a weird phase, but I'm tired of not knowing how my day went even hours later.

I can blame some of this on the longterm effects of cancer treatment, some on stress, and some on having too much on my plate, but I think there's a way to get myself back on track. I might just start keeping a daily journal of what I've done so I can see what I do most and figure out what I can cut back.

Today is Saturday. Saturdays are usually busy in my family, but today was fairly relaxed.

8:30: It was my turn to sleep in, so this is when I wandered into the kitchen to make breakfast. We had a lazy meal of toaster strudel, buttered bread, and cereal. Just noticing, that's a lot of carbs. Thankfully, I don't care about carbs.

9:00: Lazily watched a show with my daughter and husband (there's a "lazy" trend starting).

10:00: Got cleaned up, grabbed some cash, packed up the family and drove to the farmer's market.

10:30: Let my daughter buy locally-made cheese, grape jelly, and a jar of garlic dill pickles at the market and I bought some bread.

11:00: Had lunch at Outback. We wanted to hit up Denny's for a cheap meal but it was packed. There was no one at Outback so Outback won. I'm pleased though because I really wanted a tasty burger, not a Denny's burger. Sorry, Denny's.

12:30: Home again and trying to convince my daughter that it's nap time. After about 30 minutes, she's asleep.

1:00: Enjoyed a long, hot shower. My back has been hurting lately and this was a few minutes of pain-free existence.

1:30: Worked most of the afternoon. A few phone calls related to a new project, some typing and emails, read a medical journal article for another project, and bought access to a UIE virtual seminar for the Mayo UX team.

4:30: My daughter is waking up finally after a much longer nap than usual. I'm now actively working on dinner.

5:30: Eating dinner at home. It's smothered pork chops and baked potatoes. I forgot to make a vegetable but I think potatoes count. It was a nice meal, but not worth 90 minutes of prep and cook time. At this point in my day, I realized I need to start making quicker meals or I'm going to get cooking burnout.

6:00: Played playdough with my daughter while also cutting out fabric for a teddy bear.

7:00: My daughter wanted to play Angry Birds, so I watched her play with my husband for a while, then I took a turn.

8:00: My daughter's bedtime. I helped get her in pajamas, teeth brushed, potty, and in a pull up and then it was my "night off" (means my husband's turn to read stories), so I went did something that I've forgotten about. Either I cutting pattern pieces from satin fabric, checked email, or put away laundry.

9:00: My daughter's nap was too long so she won't sleep. Laid in bed with her while singing Somewhere Over the Rainbow over and over. After 25 minutes, I gave up and left her to rest quietly.

9:30: Cleaned up my office, which was covered in fabric scraps and clippings. It's much tidier now.

10:00: Things are getting fuzzy. I was tired and my back aching, but I think I put away the rest of the laundry, did some picking up, and visited Facebook for a few minutes.

11:00: Cleaned up the kitchen and washed dishes.

11:40: I'm still hurting so now I'm sitting on the couch in the dark, typing this boring blog post while the rest of my family dozes upstairs. My kid finally fell asleep around 11:15 and I'm hoping she'll sleep until at least 7 in the morning. It's my morning for early wakeup.

What I Actually Accomplished:

• Gathered qualitative data for a research project.
• Scheduled a professional development activity for the team.
• Cleaned the kitchen.
• Put away all the clean laundry (after a week of illness, so this is a big accomplishment).
• Cut out all the pieces for V1174's lining and foundation.
• Cut pieces for a teddy bear.
• Put away a bunch of toys.

Mayo Clinic UX Research Projects

At work, I'm quite busy with exciting research projects. What that means is that I need participants, so if you have ever been curious about being part of a user research project, or even if you've worked with me on a project in the past, please have a look and contact me if you want to be involved:

Pregnant Women and New Mom Research
Perhaps you've heard of the Windows 8 app recently released to support women through pregnancy and postpartum. My team wants to take an in-depth look at what women really need during pregnancy and those first months after baby arrives so we can tailor the app and its features to what matters most. Unfortunately, there is no compensation available for participating in this study but you would be helping me, my UX team, and Mayo app users around the country.

Contact me if:
1. You are pregnant, or have had a baby in the past three months, and live somewhere in the United States and are willing to participate in a 10-minute online usability test. This session may be done anywhere and anytime in the next four weeks.

or

2. You are pregnant, or have had a baby in the past three months, have a Windows 8 tablet, and would be willing to download a free app. You may live anywhere in the United States, but being near Rochester, MN is preferred. 45-minute usability test sessions may be held remotely through Skype video chat or in Rochester, MN.

Sports Medicine Research
I am hoping to talk with five people within driving distance of Rochester, MN to understand how they chose a sports medicine clinic, what their long-term goals are for healing and future play (golf, tennis, football, etc). For this study, I am ideally looking for active adults with expendable income. Interviews will be conducted by phone or Skype. Compensation may be available for this study.

UPDATE: We'd like to talk with 3-5 more people. Please contact me if you are interested!

Healthy Living Research
I am seeking five people across the United States who aspire to live a healthy, active life and want to participate in wellness activities, improve nutrition habits, and exercise more often. Participants do not need to already be active or eat healthy meals, but a long-term desire to be healthy is important. Older adults with expendable income, though others may reach out to me for more details. There is some flexibility on who participates in this research project. Interviews will be conducted by phone or Skype. Compensation may be available for this study.

UPDATE: We'd like to talk with 4 more people. Please contact me if you are interested!

The Patient Portal

This is going to be a very short post, for now. I want to talk about patient portals - health system websites for patients to log in and see their medical records, tests, communicate with doctors, or find ways to stay healthy.

I want to know what people outside the Mayo system have experienced. Tell me about the site you've used, whether you use it frequently or tried it once. What features have you noticed and tried? How often do you sign in? Is it "pretty"? That last one is a serious question.

Talk to me about patient portals. Okay, I hate the word, "portal," but I don't know what else to call it at the moment. Patient Health Record, Patient Health System, Patient Medical Records, Online Medical Records. Nothing sounds nice.

Reviews Site

I've been reviewing consumer products lately, but it doesn't seem appropriate for Perfect Tuna. So I've created a new blog under my account just for this purpose. If you want to know what I'm reviewing and how well each product performs, visit Samantha's Product Reviews.

I've finished up with Glade Expressions and found myself thoroughly unimpressed after a few days. Currently, I'm using a Garnier face "peel" each night (so far no change in my skin complexion, appearance, and softness), and will be trying out the latest color product, Olia very soon.

There are some great products I may be trying out in the coming months, and I'm hoping for more skin care and cosmetics!