Update #2 – Getting a patient’s perspective

July 10, 2014

Editor’s note: The next update for this exclusive Living Case Study series on the Mississippi Diabetes Telehealth Network will be posted online in September. This one-of-a-kind program aims to assist 200 diabetic patients living in the Mississippi delta by providing them with specialized computer tablets furnished by Care Innovations. These patients will be assisted by a network of care providers using the latest telehealth strategies.

Imagine waking one morning with a sore throat and subtle aches in your body as you rise out of bed. Walking to the bathroom, you become lightheaded. You notice you have a slight fever.

Fantastic.

You have the beginnings of a nasty cold.

You call in sick at work and head to the doc-in-a-box clinic down the road to get your hands on the antivirals that helped you so much last year when you were ill. In addition to the usual battery of tests, the physician decides to perform some blood work because you mention that you have felt fatigued recently. “Just burning the candle at both ends a bit too much,” you think.

When the physician returns with your results, you learn that you not only have the flu, but you have type 2 diabetes as well.

Just like that, your life changes. Big time. Your favorite foods are now dangers you should avoid. Your fear of needles is met head-on as you now have to inject insulin into your stomach twice a day. Even though you are exhausted after work, you now need to build into your schedule at least an hour of exercise each night.

This “new normal” of daily routines that so many patients diagnosed with diabetes face can be overwhelming, so overwhelming that many cannot develop or maintain the proper health habits that are required to mitigate their condition. To make matters even more difficult, learning the proper habits required to remain healthy is only the first step toward a better life. What is needed for the best hope of true success is a substantial change in many personal behaviors that must last a lifetime. Such dramatic and sustained changes for a person invariably require outside support from care providers, friends and family. While this support system is vital, for many diabetic patients it simply does not exist and without it they face a difficult path forward.

In the previous features of this living case study, I spoke with the project architects of the Mississippi Diabetes Telehealth Network who aim to provide external support and guidance for some of the most underserved diabetic patients in our country. Recently, I had the opportunity to speak with Jackie Collins, a waiting and willing patient participant, who has become a spokesperson for the program. She shared with me not only her struggles with diabetes, but also her passionate views on the purpose and promise of the program.

Jason Free: Tell me a little bit about yourself and your current job.

Jackie Collins: I am a resident of Ruleville, Mississippi. I am employed at the North Sunflower Medical Center through the Ruleville Health Clinic. I have been employed there seven years, and I oversee eight employees in the billing department. I am engaged with no children.

Free: At the Ruleville Health Clinic, you are currently working on the administration side within the organization, but you also are set to be a participant in the telehealth network as well.

Collins: Correct. I can’t wait. I was diagnosed with diabetes three and a half years ago. It’s been pretty tough. I am really looking forward to learning how to take better care of myself.

Free: Can you tell me about some of the personal changes you have had to make since your diagnosis?

Collins: Trying to eat right has been a big change. Giving up those things that I love the most has been hard. I am an RC Cola fanatic. Giving up my Snickers bar, watching my sugar intake with things I love so much to eat like bread, that’s been tough. Making myself exercise has been a challenge too, but most of all, I’m not a medicine taker. That was the hardest part for me in the beginning, having to swallow a pill every day.

Even though my mother was a diabetic, I never realized how hard this disease was until I was diagnosed. Growing up, I would tell her, “You have no business eating that! You know it will get your sugar level up.” But she didn’t listen. I now understand why. The flesh is weak. At some point, you give into temptation – even when you know it’s bad for you. It’s hard to eat right because most everything that you enjoy, everything that you have always eaten, seems to cause diabetes or cholesterol problems or hypertension.

Free: Why did you decide to participate with the telehealth program? Was this program the only option you had available?

Collins: No. There are a few places I could go for help, but when I learned about the teleheath program, I knew it was best suited for my needs.

Free: What do you mean?

Collins: The thing that is going to help me is I know there is going to be someone monitoring my sugar input daily because I do not always do what’s best for me. I really look forward to having the extra set of eyes on my health while I am at home. I try on my own to do what’s right, but sometimes it’s hard.

Like now, I work at North Sunflower. I’m working in the clinic, and I’m right around the corner from my primary care physician. Even though I am so close, I may get my blood work done only every six or seven months. I think I’m fine, and there is nobody really watching me on a day-to-day basis to remind me to do the right things. In this program, I know there are going to be people monitoring my situation. If I haven’t gotten my blood work done in the time frame that I should, somebody is going to be contacting me. If my sugar levels go too high, they will fuss at me to make sure that I am not breaking any rules, and if I am, they will get on to me to stop right away.

Don’t get me wrong. I don’t need someone to baby me or hold my hand, just to be there when I need some extra help staying on the right track. I need that extra nudge.

If I know somebody is going to be watching me, I am going to do what I need to do, even though I should be doing it anyway because it’s my health that’s at stake. When I feel fine and I check my blood sugar and it’s not high, I sometimes think, “Ok. I’ll lay off my medicine for a couple days.” But with this program, somebody is paying attention to me, even if I am not. I know I am going to have to eat right. I am going to have to take my medicine on time, and I am going to have to exercise even when I don’t want to. This program is going to make me do what I should be doing in the first place.

Free: Have you spoken with other people who are hoping to be patients in the program?

Collins: I have. There are a lot of patients in the area who are excited about the chance of being a part of the program.

People outside of Mississippi may not know how hard it is for many people here. I am luckier than a good many people here. Many don’t have cars or ways to get to the doctor for check-ups. People here sometimes don’t have the time to think about what they eat and how much they exercise. They work hard and they take care of their families, but they forget to take care of themselves.

When news got around that this program was going to be available here, people got excited because they see how easy it is for them to get real help.

Free: How did they hear about it?

Collins: Some saw the commercial that I was in that plays at the clinic, and the others saw the advertisements that are posted all round North Sunflower.

Free: What was your role in the commercial?

Collins: It was very interesting but also quite a surprise, because they asked me to write my own script. At first, that scared me a little bit because I had never written anything like a commercial script. When I told them that I wasn’t sure if I could write a professional-sounding script, they said they wanted to make sure that I used my own voice, my own story. That way it would be more persuasive to the patients coming into the clinic and watching the commercial. So I sat there for about 10 minutes not knowing what to say, and then I started writing about the changes that have happened in my life due to diabetes and it just flowed out. I wrote the script and memorized it, and they ended up using almost everything I said.

Free: What were some of the points you mentioned?

Collins: I said that I was excited about getting healthy for the first time in a long time. I said I felt the program was going to help me because I know that I have good people in the program, not only as far as other patients, but I know I have a medical staff that is going to help me, guide me and motivate me to eat right, exercise and take my medication like I should. A lot of us know what to do, but sometimes we need someone to coach us into doing what we know we should be doing anyway. At least I do.

I also talked about how long I have been living with diabetes and how hard it is to manage when you live in the Mississippi delta. We pretty much eat only soul food, known for good seasonings and rich-flavored cooking. I have had to learn how to curb certain seasonings and things I would like to eat. I had to learn that it is not so much about what you eat, but how much of it. I can have what I want. I had to learn to do it in smaller portions every time, not just every once in a while.

Free: Having been raised in Alabama, I understand what you mean. There isn’t much in the typical diet of the American South that doesn’t cause medical problems if you are not mindful of your eating habits. That’s one of the reasons the South has so many health problems, and why so many eyes are on this telehealth program.

Have you thought about what you are going to need to learn to help you once the program is over and they take the Care Innovations tablet away? You aren’t going to have the tablet and its monitoring support system for the rest of your life.

Collins: You’re right, and I have thought about that a lot.

I look at it as “practice makes perfect.” It’s like in my regular job. Once I know what a boss or co-worker wants, I am going to have it ready before you actually ask for it. After a month or so in the program, everything is going to be part of my everyday life. It’s just like getting up in the morning and taking a shower, brushing your teeth, getting dressed and coming to work. It’s going to become a part of my daily routine. The first steps are what I need. I can take care of the rest of the journey with me and my fiancé. I won’t need the tablet forever.

Free: So, from a personal perspective, it seems as if you don’t envision many problems. What about other participants in the program? You know this particular patient population pretty well. Do you think others will have problems? If so what do you think those problems will be?

Collins: Some will and some won’t. It’s all about the individual’s determination. You have to be strong willed. If not, nothing is really going to help you no matter what technology you have or the support you get. You have to decide you want to put away the things that made you sick, even if it’s hard to do.

Growing up, there have been many things that I thought played a very big part in my life, but at some point I had to make a decision to move away from them if they kept me from having the life I want. Do I want to go this way, or do I want to go that way? It’s all about the individual person and what he or she decides they want for themselves. Are they getting in this program to benefit from it, or are they getting in it just because someone said, “When you participate, you get an iPad. You get a Wi-Fi hot box.” Are you getting into the program to get healthy? If you are, then you should have no problems because the tablet is easy to use and the instructions are so clear that anyone can understand them.

Failure is not part of me. If I am going into a new program, I am going into it with the mindset that I am going to get everything out of it that I can so when I have to branch out on my own, I am just like a bird. I can flap my wings and I can fly independently. That’s me.

Free: In general, do you think that telemedicine and the idea of getting personal medical information through technology is a good one?

Collins: I can only speak for myself. I think it’s great.

If it can prevent me from sitting in the doctor’s office for an hour, hour and a half, and I can communicate effectively with medical staff in the comfort of my own home, to me, that is awesome. It’s just like me working from home sometimes. I love to be home and working while I still have on my pj’s with my feet propped up on the table.

In this situation, I know when I’m at home if there is something that is out of the norm with my health, someone will be right there to direct me. I am so excited. Telehealth is new, and it is going to benefit me and my fiancé. It is like I have my own little personal care team, and I don’t have to wait with everyone else in the clinic lobby. Everyone I need to help me will be right in my own living room.

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