Friday, May 7, 2010

Interview: J&J Diabetes Institute

Non-profits like Project HOPE aren’t the only entities trying to make a difference in patients’ lives around the globe: associations, corporations, governments, providers, local communities, and individuals all work together to make change a reality. Corporations can play an interesting role in changing the way we think about healthcare delivery. Technology is a HUGE enabler, especially in developing countries, to help facilitate shift in site of care or caregiver to expand capacity, reduce costs, and often… improve treatment.

Globally, the Johnson & Johnson Diabetes Institutes provide healthcare professionals with education, training and a space for collaboration with the aim of enhancing the understanding of diabetes and helping to improve patient outcomes. Each Institute (typically a partner hospital or Center of Excellence) aims to ensure that diabetes specialists are able to receive skills training and education customized to reflect the needs of local patients and providers. Their slogan “transforming diabetes care through education” is strongly aligned with HOPE’s current programs, and as a partner, I thought it would be interesting to see what they’ve learned from investing in emerging markets for diabetes care globally.

Audrey Finkelstein is the Worldwide VP Advocacy and Professional Relations - Global Strategic Affairs at LifeScan Corporation, a Johnson & Johnson operating company that specializes in home glucose monitoring and devices. She has agreed to be a part of my Advisory Board for researching potential chronic disease programs and partnerships for HOPE this summer. Audrey also works with J&J’s Diabetes Institute and generously has shared some of her thoughts on the needs of patients and their communities globally.

What do you think are the greatest needs of diabetes patients globally?

After a patient with diabetes has been diagnosed, the most important goal is to make them as self sufficient as possible. Finding a physician that has extraordinary relationship-building skills is a bare minimum. “Diabetes is a disease, not only of numbers, but of the heart and the soul.” In order to treat the physical, mental, and emotional needs of a patient, you have to nourish the whole person and empower them.

“Diabetes is a disease, not only of numbers, but of the heart and the soul.”

How do physicians build that relationship? Is that something you can teach?

This requires a heightened level of empathy and compassion in medicine that maybe overlooked in the priorities of the medical education systems globally. Physicians must reach out to their patients and build open, honest relationships, especially with diabetes. Many patients will come back for their A1c checkups and have filled in glucose numbers that aren’t real or eaten well just a few days before their visit. The best doctors like Dr. Edelman, an endocrinologist from UCSD and founder of Taking Control of Your Diabetes, view themselves as a “life coach”. Only then can you treat the whole person and build the trust that transcends the doctor’s office, empowers the individual, AND improves patient care.

How do you address diabetes in a community: prevention, detection, treatment?

“It takes a village to treat a person with diabetes. If a person has diabetes, then the family has diabetes, and the community has diabetes.” If I could, I would adopt a village and bombard them with prevention and awareness messages from the elementary schools, to their temples, to their primary care settings, and at every level of the healthcare system. Behavior change (e.g. nutrition and exercise) in an individual is tough – you need your family and your friends to be all on board. Right now, there is not enough awareness or seriousness around the need for increased chronic disease prevention and control. We need global and local leaders to adopt villages one-by-one to make an impact.

“It takes a village to treat a person with diabetes. If a person has diabetes, then the family has diabetes, and the community has diabetes.”

In my research with care givers and patients this is 100% accurate. Without family support to change daily routines, especially food!!, the individual will usually compromise on his/her needs. This very common with a “woman of the house” as well who feels obligated or uncomfortable changing the family’s meal schedules for her sake.

Poster from CMC Vellore in southern India.

What has been your experience working with diabetes in developing and underdeveloped countries vs. the US?

Diabetes is not the same around the world. What is frightening in Asia, especially, is that populations are becoming diabetic at significantly lower BMI’s. Globalization has had a significant change on their lifestyle (i.e. they are less active) in addition to worsening eating habits and growing popularity in fast foods (and local, cheap fast foods). As you know, building capacity in the healthcare systems is not enough. You’ve seen the lines of patients waiting all day in the hospitals (and yes, I have) and know that that will never be enough. Joe Solowiejczyk, who works for Life Scan at J&J, has done a lot of work training diabetes educators in India. There he’s “treated the heart and soul” of patients with diabetes and really understands what the patients need, what works, and what is currently failing them in the system.

As a result of my conversation with Audrey (we also discussed some of my preliminary analyses from the field), I wanted to take some time to talk with Joe to understand his experiences in India – especially while I am still in country and can build off of his insights.

Joe Solowiejczyk is Manager of Diabetes Counseling & Training for LifeScan Corporation, a Johnson and Johnson Company. Joe has also lived with Type 1 diabetes for over 40 years, and is extremely passionate about translating his personal experiences into patient care. As a nurse, diabetes educator and family therapist, he specializes in assessing how family dynamics impact the management of diabetes and designs interventions that result in more effective coping and optimal metabolic control. He is a full-time faculty member of the Johnson & Johnson Diabetes Institute and is on the faculty of Children with Diabetes.

What do you think is the largest challenge for patients with diabetes in India?

Patients lack resources: access to people, access to medications, access to testing their own glucose levels to know how and if they are improving on a daily or weekly basis. As a person with diabetes for over 40 years, I know how important access to resources is for a person to receive quality care and effectively administer self-care. Nurses get paid more abroad (as do many doctors) and attrition of healthcare workers abroad is a serious concern in developing countries.

Additionally, patients often can’t afford all the regimens of care they require. If they are (1) taking oral medication, (2) insulin dependent, and (3) testing their glucose on a regular basis – all three of these activities have a cost associated with them. Type 1 patients often prioritize the insulin and Type 2 the oral medication with little or infrequent glucose testing.

Is lifestyle intervention possible in developing countries like India?

Lifestyle changes in India are very apparent in urban and rapidly growing in rural areas (note – I’ve seen this too and this is not only shocking, but VERY scary!!). As a family’s salary goes up, they move less, and eat more. But still, the answer is YES! This requires intense work with patients and their care givers and family members. You have to work with them to come up with a plan focused on behavior change.

“Love and compassion are most important for healing.”


Dr. Nihal Thomas, from CMC Vellore, describing health in urban and rural India.

Although very loyal to their “family doctors”, patients in India will often shop around for specialists that suit them. If a physician tells them to test 3 times a week and they think that is too much (which by the way, it is hardly helpful because you never understand the daily highs/lows!), they will find another doctor that tells them 2 times a week is ok.

I had a couple who kept coming back again and again, but there were no changes in their numbers. They needed to have the emotional component of their disease addressed, but this has a very poor social stigma in India, in general. Culturally, it is embarrassing for individuals (and their families) to see psychologists.

Psychologists are love/hate in many countries I’ve noticed: how would you suggest reaching patients emotionally in India?

I think that there is a larger role for dietitians to take on some of the counseling roles for patients in India. From my experience, they would be open to talking to a dietitian with strong coaching and counseling skills. India has a very didactic culture, and they can use this to their advantage (rather than disadvantage) to help the patients overcome mental hurdles they may not be willing to accept in the first place.

I talked to a diabetes educator in Bangalore yesterday about this and her response overwhelmingly confirmed this perception. Each patient usually sees a psychologist once to test the “stress” levels of the patient. If the patient is deemed stressed, then they are required to come back for more sessions. What happens is that patients view this is a test and a HUGE disappointment if they “fail,” which in my opinion, likely worsens any emotional issues they are already dealing with. I think Joe is on to something here with his suggestion…

What is your perspective on effective prevention in India?

Prevention has to be delivered at the same time as efforts for health capacity building and improved care. ”It is not enough to have a slogan in a newspaper.” You have to deliver “doable,” practical messaging that patients understand. We need public health messages like HIV and TB. We need to work “hand in hand” with primary care doctors to understand the disease and refer patients before or after being tested for their glucose levels.

”It is not enough to have a slogan in a newspaper.”

Working with doctors within and across countries can be a highly political environment. It’s important to engage everyone in this journey and encourage peer-training (e.g. physicians training physicians, diabetes educators training diabetes educators – as in Project HOPE’s model!).

Me with the St. John's Hospital diabetes educator team in Bangalore.

So that’s what I’m trying to do!! This week was full of interviews with providers and stakeholders in the diabetes and chronic disease world globally and in India. It’s exciting to start pulling together the pieces within and across borders – person to person, village to village, country to country, and region to region, and each to the global community.

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