The Role She was Meant to PlayFriday, February 24, 2012
Through her writings, lectures, and leadership, Riva Greenberg (pictured here) has helped influence the diabetes industry on numerous levels. As a patient advocate, she is helping transform how fellow persons with diabetes (PWD) emotionally live with diabetes, as well as improving the patient/provider relationship to make each more successful. And as part of the Diabetes Online Community (DOC), she has been part of a collective voice forging a connection with pharmaceutical and medical device companies and helping both sides understand each other’s aims.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Ten years ago, Riva Greenberg found herself standing at a crossroads in her life. And as is the case for many in a similar position, she was experiencing both freedom and fear.
On a personal level, she was engaged to be married, and professionally she was dealing with a recent layoff from a corporate communications position.
While in the midst of these ongoing changes, one constant remained in Greenberg’s life: type 1 diabetes. She had been a long-time veteran who had managed the disease successfully for over 30 years.
However, even with healthy and consistent self-management skills firmly in place, she had recently undergone surgery for a frozen shoulder—a diabetes-related complication. Between the surgery, and her desire to live a long life with her soon-to-be-husband, she decided to see a diabetes educator for the very first time.
The appointment with the educator, which was meant to help her personally, ended up being somewhat of a revelation for her professionally.
Greenberg had a long successful career working in various marketing, writing, and public relations capacities, and she had honed her skills as a master communicator. Yet, for some time, she had been reflecting on her career, and she was looking for another way to help people. After meeting with the educator, Greenberg seriously contemplated a career change.
When she looked into the requirements for becoming a diabetes educator, they were somewhat daunting, and she viewed it as a position that dealt mainly with the medical aspects of the disease, and she found herself wanting to address the emotional component of it.
Thus, she took many of those same skills and proficiencies she had used to show companies how to talk to the outside world, and she began slowly, gradually applying it to the diabetes industry. She started interviewing people with diabetes with the hopes of turning their stories into a book.
Since then, she has authored two books: 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It, and The ABCs Of Loving Yourself With Diabetes; contributed a chapter to the book, My Sweet Life: Successful Women with Diabetes; and became a columnist for The Huffington Post writing on diabetes and health.
As a patient advocate, Greenberg has focused on helping PWDs change their mindsets in how they view and deal with their diabetes, looking to as she says “flourish,” rather than just cope with it.
Greenberg has a firm pulse on the commercial, patient, and provider segments of the industry, and DiabetesCare.net wanted to speak with her about how she views her role in the industry, what projects she is working on now, and how she hopes to have a lasting, positive impact.
DiabetesCare.net: How do you view your role in the industry today?
Greenberg: I see my role as a patient advocate and patient expert. When I noticed everyone in diabetes care had initials after their name, I swiped “DPE” (diabetes patient expert) for myself. And as an expert I have been welcomed into the diabetes industry and my opinions have been sought out. As an advocate, I speak to and for patients to pharmaceutical companies and medical professionals.
One of the key areas I see that needs to be developed in order for patients to do better managing their diabetes is the relationship with their doctor. We keep looking to have patients change their behavior, but we’re not addressing an essential, underlying component of that. The quality of the relationship patients have with their providers.
I think the adage, “Walk a mile in my shoes,” is so true. If you don’t have a chronic illness, you don’t know what it feels like or what it takes to get up every day and deal with it.
One thing I’m doing to help doctors better understand the patient experience--and improve patient and provider outcomes--is working with Quantia MD in a series called, “Ask the Patient.” I’ll be answering physicians` questions about managing diabetes and how to inspire behavior change.
Also, most patients don’t see an endocrinologist, or a specialist trained in diabetes, or a diabetes educator. They see their primary care physician, who unfortunately received limited training on diabetes in medical school. Some physicians aren’t acquainted with newer medications or don’t know enough about titrating insulin or have the time to teach patients how to use it. So many patients aren’t on the best treatment plan for them. That means they may unnecessarily get complications.
DiabetesCare.net: What can patients do to improve their interaction with their physician and get better outcomes?
Greenberg: Patients need to first understand that their illness is theirs. It’s not their doctor’s. While our health care providers guide us with their knowledge and expertise, as patients, we have to take responsibility for our illness and meet our providers as partners. That means being informed about your condition and also forthcoming during office visits about what’s going on with you both physically and emotionally. A lot of patients aren’t very open because they think the doctor knows everything, or they feel guilty or embarrassed. While talking with patients who suffer from peripheral neuropathy, many told me they were too ashamed to mention it to their doctor.
It’s understandable that you want your doctor to take care of you, but your doctor can do a better job with your help.
It’s also helpful for patients to go to their doctor’s office with questions about their concerns and write down the answers. Often when you’re at the doctor’s office things go over your head or you’re too nervous to remember later what he or she said.
I think patients also need to identify for themselves why they want to be healthy. All of us should ask ourselves, `Why is it important to me to be healthy?` When a doctor says, ‘you need to lose 20 pounds or you need to start exercising,’ that advice typically just rolls off a patient’s back because it’s not connected to something personally meaningful for the patient. Not until the patient says, `hmmm..well, if I lost 20 pounds I’d have more energy to play with my grandkids and that’s important to me or, if I got fitter, I could play basketball with my son and we could spend more time together` will most patients then begin to change their behavior.
DiabetesCare.net: In your advocacy, you speak to PWDs about holding a positive mental approach with their disease management. How much does having the right attitude help with successful disease management?
Greenberg: Certainly it is one of the keys, but it is more than the right attitude; it is taking the right actions that come from that attitude.
I believe you can have a great life, not despite having diabetes, but because of it. You can use diabetes as a catalyst to eat healthier, get fitter and find more meaning and purpose in your life. I also believe we should be looking at how do we help patients who are already managing their diabetes to flourish?
The term "flourish" is used widely today in the field of positive psychology. In illness we are always talking about “coping.” Yet coping has a negative connotation; a sense of struggle and that you are working very hard just to come up to normal. Of course there are people who are struggling, or who are depressed, or in denial and need professional help. But nobody talks about going beyond “normal,” creating a life that is rich, meaningful, and fulfilling with a chronic illness. That is a life in which you are flourishing, and anybody can have it. With diabetes, you just have to do the other things diabetes asks you to do.
I want to put “flourish” into the lexicon of diabetes and chronic illness. Many people I’ve interviewed flourish because of their diabetes. They lost weight they weren’t motivated to lose before because they got diabetes. They took up an exercise regimen and stuck to it for the same reason. They began making a contribution to others or in their community because they realized life is short and precious.
We also do better when we build positive pictures of what we want, an idealized self and future. We begin to move toward those pictures and there is more energy in moving toward what you want than being focused on what you want to avoid--like complications.
DiabetesCare.net: With the advent of social media and the Diabetes Online Community (DOC), do you think the pharmaceutical and medical device companies have become more responsive to the needs of people with diabetes?
Greenberg: Yes. Many people within the DOC are advisors to such companies and getting press releases from these companies. They know we are part of the influencers out there and we have a direct pipeline to patients and can be a voice for patients.
Three years ago, Roche invited more than 30 of us bloggers to a brainstorming meeting with them. Roche wanted to enter social media and they wanted to understand the “dos and don’ts” of it. We had a day of sharing ideas. It was smart on their part as they understood our influence.
They have continued to hold this meeting every year, and they have invited people from the diabetes industry who they think would be beneficial for us bloggers to meet. They have had representatives from the American Diabetes Association, the American Association of Diabetes Educators, the International Diabetes Federation and the CEO of the Juvenile Diabetes Research Foundation International at the meetings to help us create working partner-relationships.
As another example, Amy Tenderich who has the blog Diabetes Mine has been a proponent of technology and design for diabetes devices for years. She launched the Diabetes Mine Design Challenge that culls innovative thinking for new devices with Apple-like design appeal.
DiabetesCare.net: Does the DOC want to get actively involved with petitioning the government?
Greenberg: I think it is coming. I belong to a group called Diabetes Advocates. It was started by Manny Hernandez, founder of the Diabetes Hands Foundation and Tu Diabetes. Diabetes Advocates has more than 200 members, including patients and providers in diabetes. We feel we are stronger as one group to help educate, inform, and advocate.
I can imagine it’s only a matter of time before we take on the government.
DiabetesCare.net: What concerns do you have regarding type 1 and type 2 diabetes currently?
Greenberg: For those of us who have type 1 and who are involved in the industry, we wonder why does every advance come out in Europe first? Somehow it seems to get stalled at the FDA here in the U.S. For example, Medtronic’s insulin pump, the Paradigm Veo, suspends insulin delivery when your blood sugar is already low. It’s available in Europe and much of the world, but still awaiting FDA approval here. This is frustrating.
I also fear the present economic situation will cause a slowdown in funding for a search for a cure, particularly for type 1.
My concern for type 2 diabetes is that it’s incidence will only continue to grow. Type 2 relies largely on healthy lifestyle behavior and people will not make the healthy choice until the healthy choice is the easy choice. And we are not working hard enough at that. We are bombarded by junk food at every turn. It’s cheaper than healthy food. We subsidize unhealthy foods but not fruit and vegetables. We don’t have ample, safe, and available outdoor spaces to exercise and people are working longer hours chained to a desk, with kids sitting in front of computers and game stations. I could go on and on.
DiabetesCare.net: Can you tell me a little about the coaching model you created called the Sweet Spott?
Greenberg: I developed the Sweet Spott Model with two colleagues for healthcare providers to use with patients so that they get engaged in developing and actualizing their own treatment plan.
The actual “Sweet Spott” is that place where you are successfully managing the two domains that are essential for diabetes management--medical and emotional. In other words, you have enough medical knowledge and emotional resilience to take very good care of yourself. SPOTT is an acronym for S: Story Listening; P: Patient Possibilities; O: Options to design their next step; T: Taking action; and T: The What’s Working review.
Anyone who works with diabetes patients needs to be both a teacher and coach. So the first step in the coaching model is listening to a patient’s story. There is so much to learn that is useful in helping your patients from listening to how they live. What do they have easy access to? What don’t they? What do they cook? Do they cook or eat all their meals out? Where have they been successful in their lives before? What skills and strengths do they possess? All of this knowledge helps you help patients succeed.
DiabetesCare.net: Can you picture a day where there is a cure for type 1 diabetes, and if we get there, what do you imagine you would do then?
Greenberg: This month, I have had diabetes 40 years. Forty years ago I heard we would have a cure in five to 10 years. Everyone who has had type 1 diabetes for any length of time will tell you they have heard the same.
I’m reconciled to having it the rest of my life, but I’m willing to be delightfully surprised by a cure! For now, I am hopeful there will be many more devices coming down the pike that make managing diabetes easier.
Intellectually, I can imagine one day there is going to be a cure, but when you ask can I picture it, the answer is no. Then I’d have to figure out what else to do for a living!