Friday, December 31, 2010
Project HOPE Board of Directors – Diabetes Presentation
The Africa Diabetes Leadership Forum: Johannesburg Sept 30-Oct 1, 2010
- General awareness education
- Exercise
- Nutrition
- Training healthcare workers
- Early detection / screening
- Treatment protocol / coordination
- Patient empowerment / compliance
- Quality of resources / data
- Complications prevention and management
South Africa Findings: A Dual-Burden of Disease
- Patient-focused diabetes education: nutrition, exercise, screening, management, compliance with complications
- Juvenile diabetes programs: access to insulin, education programs for family and educator.
- Medical capacity building: physician education, diabetes educator nurse training programs
Kenya Findings: Africa's Shocking Glimpse of Diabetes
Monday, July 5, 2010
Egypt Findings: Targeting & Coordinating Efforts
Egypt was by far one of the most interesting visits due to the variety of diabetes efforts and quality of interviewees ranging from the regional World Health Organization, International Diabetes Federation, Cairo Diabetes Institute, Egyptian Society for Diabetes, and multiple contacts within the national Ministry of Health. Egypt is a country of about 70 million, of which 4.8 million patients are estimated to have diabetes. Similar to the Gulf region and Asia, a high propensity for abdominal weight gain is a huge risk factor for aging individuals in Egypt – and every year the high risk population grows younger (more like 20-30 years old). Almost 30% of the entire country’s population resides in Cairo (about 20 million), perpetuating the “urban” lifestyle lacking exercise and healthy eating habits. In addition, the city is fairly hectic and doesn’t facilitate any form of transportation other than motor vehicles – as I experienced firsthand by attempting to walk around the neighborhood near my hotel (street crossing is dangerous as well!).
Project HOPE has had a presence in Egypt for 35 years (based in Cairo since 1975) and Dr. Reda is the current country director managing a number of primarily maternal and child health (MCH) and infectious / rare disease programs. As a pediatrician herself with master’s education in NGO studies she has a lot to offer between her personal network and experiences over the years. I have to admit, she was also very willing and flexible to accommodate an intense interview schedule and never missed a beat from one to the next. Additionally to my surprise and delight, my colleague Gabi Meira (from the Brazil Findings post) joined me in Egypt as a fellow volunteer to support the interview process and help me think through solutions at a broader systemic level.
Us all at lunch
Access without Affordability:
Within the first two interviews it was clear what the largest issues were in Egypt for diabetes care and in many instances, healthcare in general. Egypt has a very strong healthcare infrastructure with capable hospitals and clinics and well-trained physicians and nurses. The single largest issue that affects how patients seek and receive care is affordability. We heard the public health insurance system described as everything from “minimal” to “non-existent.” Patients almost always pay out of pocket for healthcare services whether in a public or private facility. In addition, the availability for theoretically covered treatments for poor patients (e.g. insulin) is often limited or only available in certain facilities at different times (so you may have to try a few before you can get the treatment you would need for free). Similar to the UAE, without an insured primary health system patients often wait until they are fairly ill to seek treatment. At that time their cost of care is likely more expensive – so this is really a self-defeating process for most patients.
I also heard some horror stories similar to that in Indonesia where patients in the greatest need can be refused treatment due to their lack of affordability. For example, I was told that it is not uncommon for a surgeon to come out of the operating room half way through and validate with the family members that they can pay for the cost of the procedure – note this is before sewing the patient back up. I would hope this doesn’t happen in some of the larger or well respected facilities but you can imagine it definitely shapes patients’ perceptions and willingness to seek treatment unless needed.
My first interview was with Dr. Hassan El Kalla who used to work as the first undersecretary with the Ministry of Health and now manages his own business that focuses on investments related to healthcare, real estate, technology, education and the intersection of all of the above (how fascinating!). I’ve never heard of anything quite like his role but it is clear he has worn many hats over the years and his passion has driven him to develop new ways to benefit the larger communities in Egypt. “You can’t just focus on one” he said, because a lot of health, education, technology investments are interrelated and require coordination for effective implementation. In addition to setting the stage on the health needs in Egypt, Dr. Hassan also connected me with Health Care International (an Egypt-based consulting company) and MOH contacts to better understand the current state of efforts and needs in Egypt.
Today’s Efforts – Treatment and Patient Empowerment:
It is impossible to discuss diabetes in Egypt without recognizing the work of the Diabetes Institute in Cairo with Dr. Ibrahim El Ebrashy who has led the vision in addition to a number of national planning efforts related to diabetes treatment. The Diabetes Institute has 350 beds and sees about 30,000 patients per month, of which 95% are Type 2 cases. In addition to podiatrist, optomologist, dental, and vascular surgery specialties, the center aims to provide comprehensive diabetes care for the condition and complications over time. Dr. Ibrahim believes strongly in early detection as a way to prevent the progression of diabetes among his patients. He also stressed that patient empowerment is the only answer to challenges related to lifestyle change. Patient education efforts are there, but still young in development. In addition, patients that come from rural areas often do not read or write and would require educational materials that are more illustrative (similar to India).
Although a successful model, the Diabetes Institute reaches only a regional selection of patients – not even a large contingency of Cairo. With efforts focused primarily on patient treatment and empowerment within their community it will be imperative to track outcomes related to their efforts to see how they can be replicated (and affordably!) in other parts of the country.
I also had the privilege of meeting with Dr. Azza Shaltoot from the Egyptian Society for Diabetes who has been working since 2000 to implement effective programs related to treatment and patient education for primarily Type 1 patients. Their programs were based off of the work of a French model with in the International Diabetes Federation community. They translated a 20 hour course from French to Arabic with a series of educational books for children and their parents to drive patient empowerment among the communities in Cairo. They also developed their own introductory video which featured two children acting out some of the main concepts discussed in the books with songs to remember certain content (similar to a children’s TV show – it was great!). What was interesting to me is this is very similar to our 5 Steps for Self Care program in Mexico working with mainly Type 2 adults (although could be targeted towards any age group since both Type 1 and 2 are discussed). They conduct the training sessions in hospitals where they have partnerships through a teaming approach among healthcare workers or in their own educational room and clinic within their workspace.
Dr. Shaltoot expressed their interest in expanding to Type 2 efforts since that represented the larger affected population. What fascinated me was the solution they developed – unlike anything I’ve seen in any other country: they created a hotline for patients with diabetes! In 2008 they launched the system run by an educated counselor (not nurse or diabetes educator) who has access to a diabetes database full of thousands of questions and answers related to diabetes. They developed the software in collaboration with the prime minister (all Q&A resources were provided by the Parma University in Italy) and since it has operated 12 hours daily and served over 33,000 calls. They also record and track each call in the system by phone number to keep data on the needs of the patients calling in and how the cases are being managed. She also described a phone-based diabetes monitoring program that called patients based on their level of control: good (monthly), moderate (weekly), and poor (daily). I don’t believe there are outcomes tied to these efforts and how they’ve impacted patients’ glucose levels and incidence of complications long-term, but helping establish metrics for tracking will make or break the case for replicating their work in a larger scale.
In David Bornstein’s book on social entrepreneurship, How to Change the World, there were several case studies on the effectiveness of hotlines to provide resources to the masses and manage social needs in a very accessible (and convenient) way. I had wondered if this could work for diabetes as well and was delighted to learn more about their program. I see a lot of opportunity for Project HOPE to collaborate with the Egyptian Society for Diabetes to help expand their capacity for their call centers and patient education efforts. One of the largest challenges they’ve had is promoting the services they offer (e.g. marketing) and working with the MOH and national healthcare leads may help grow their investments to benefit a larger patient population in Egypt, the region, and globally as well.
Increasing Patient Awareness:
One of the first things Dr. Hassan El Kalla mentioned was the need for a baseline. Where does Egypt really stand with respect to diabetes prevalence nationally? Although the IDF has statistics for the rates in country, few trust these numbers and believe that a larger survey has to be executed to get to a more accurate estimate. “Without a good starting point, it’s impossible to know who you’re targeting and what impact you’re having on the population with your investments.”
This was reinforced by Dr. Ibtihal, the Middle East regional director for non-communicable diseases for the World Health Organization. She stressed that public promotion and prevention were top priorities for Egypt and the larger region. Project HOPE’s experience in educating patients through early detection programs (such as the Promotores or “peer educators” in Mexico) could be a huge help. When I asked about where people congregate or get their information in Egypt – I was told again that shopping malls and TV were possibly the most effective mechanisms for reaching patients. For example, many traditional medicine therapies (based on Chinese or Asian techniques) are advertised as being able to treat or cure diabetes. This is dangerous as many patients avoid the formal health system and seek substitutes without outcomes or proof of effectiveness.
Dr. Sami Gad Allah of Health Care International (HCI) also reiterated this need to increase early diagnosis and those who seek proper treatment. As a part of their investment in insurance agencies in the private sector, they are currently prioritizing diabetes and other chronic conditions with a new focus on homecare. With the opportunity to reduce costs and improve quality of care, this would be the first homecare effort in the entire Middle Eastern region to his knowledge. As he describes it “diabetes is not a disease, it’s a condition and needs to be managed with the patient’s lifestyle daily.” If he can demonstrate outcomes and reduced costs in the private sector, this could be a model that would benefit public patients as well.
Primary Care Promotion:
One of the best ways to increase public awareness in a targeted way is to work through the primary care health system. Dr. Ibtihal was a strong advocate for this approach as well as a sustainable investment for training primary care physicians and nurses, similar to Project HOPE’s model in China. She recommended we speak with the MOH leads for primary care to better understand their priorities and efforts to date.
Dr. Nasr El-Sayed is the Minister’s Assistant for Primary Care and provided a one of the most interesting interviews of our visit in Egypt. The MOH sees primary care as essential for the early detection / screening and long-term care components with the opportunity to target multiple risk factors vs. focusing primarily on the specialty treatment with endocrinologists. He discussed a lot of the lifestyle changes in the patient population over the past 20 years that he believes have been the primary cause of obesity, CVD, and other conditions increasing in prevalence dramatically.
Dr. Ibrahim El Ebrashy from the Diabetes Institute added that there are a number of diabetes clinics within hospitals that serve to provide similar functions as diabetes-educated primary care physicians.
Educating the Future of Egypt:
This is not a new concept, but one that continues to come up as I probe for ways to prevent obesity and chronic disease that stem from lifestyle conditions. The MOH Assistant for Primary Care could not have stressed this enough “our students are the future of Egypt.” Working to help provide them healthy options and the fact-base to make healthful decisions is critical for educating tomorrow’s population and their families. From what we can tell, Project HOPE’s school education programs in Mexico are a strong fit for the system in Egypt.
This also aligns with the WHO’s goal to educate patients directly long-term. Training healthcare workers is one step in the right direction, but at the end of the day it only matters if the information reaches the patient as well. Patient empowerment ideally starts before the disease has progressed to a stage of complications. As Dr. El Ebrashy mentioned, it’s critical to tailor these messages to the language and culture in a very specific way. The materials need to be in Arabic, but not Gulf Arabic – specifically Egyptian Arabic. These subtle differences make a large difference as to how the materials are received and the impact it has on the patient.
Coordination is an Imperative for Success:
One of my last interviews in Egypt was over breakfast with Dr. Adel El-Sayed, an International Diabetes Federation lead for the Middle East region. In addition to validating the previously mentioned findings, we spent some time discussing how important coordination of efforts are for investments in diabetes and chronic conditions in Egypt. I am impressed by how many efforts and leaders have already done to make a difference in the communities in Cairo and beyond, but few are coordinated and looking at the larger system. The MOH and Diabetes Institute efforts with the national diabetes strategy have only recently reached out to him for input from the larger IDF perspective. For example, scoring systems that are used to classify groups of patients at risk could be used to segment strategies for diabetes prevention, intervention, and treatment long-term. I loved this concept as a way to prioritize resources and tailor care in a systematic way. Dr. Adel El-Sayed has had years of experience in Egypt and the larger region and provided the most comprehensive view across stakeholders and initiators of efforts in the Middle East.
Closing Thoughts…
Unlike the UAE and Indonesia where national diabetes efforts are just being initiated, Egypt has a number of efforts that need to be understood and mapped against the care continuum to pinpoint where Project HOPE can have an impact. For example, if the Diabetes Institute is heavily focused on treatment – what can Project HOPE do to increase early detection to channel patients into their facilities? Additionally, MOH priorities are essential for a non-profit to align with the “vision” of the ministry and become a team player in facilitating and coordinating change across a number of stakeholders. Over time, I’d like to see Project HOPE become trusted advisors in a number of countries where they can offer their experience and expertise from working in other countries and regions.
The last day of interviews in Cairo was one for celebration as we’d now completed over 100 interviews (102 to be exact) in over 8 countries since starting in early April (12 countries if you include Cuba, Saudi Arabia, Nepal, and the US by phone). This was for me a huge accomplishment and I’m so thankful to everyone globally who has supported this effort to date by donating their time and experience or recommending referrals to contribute. I have the next two weeks out of the field to start processing information and prepare for the last assessments in Kenya and South Africa – both of which promise to provide unique and exciting research related to patient needs and opportunities for Project HOPE!
Wednesday, June 30, 2010
UAE Findings: Strength in Infrastructure
The UAE has one of the most interesting health provider and insurance systems I’ve seen to date. Based on the complexity of the patient population and varied forms of insurance, the health system here has unique challenges and opportunities for new diabetes programs. One of the most important influences on the system is the Expat population in the UAE: about 80% of the population is comprised of Expats (non-citizens) who do not benefit from the government healthcare programs. Not only does this mean the population is very diverse (Dubai and Abu Dhabi are considered two of the most international cities around the world) but only 20% of the population relies on government programs (and funding) for healthcare.
A Complex Infrastructure
So how does this impact care as a whole? The vast majority of health in the UAE is private: privately insured and privately provided. The result has been a significant investment in health infrastructure from both private and public funding to support the larger patient population (and in theory that of some of the region as well). In Dubai, the “Healthcare City” is a mini-city of some of the nicest healthcare facilities I have seen anywhere with top-of-the line technology, equipment, and information systems. However, this can be seen all over the UAE with a number of exemplary hospitals and clinics, many of which are international chains that have been “imported” to treat a specific patient population or affordability level. For example Mubadala, Abu Dhabi’s investment arm, is currently in the process of establishing a Cleveland Clinic in Abu Dhabi. The Expat population is comprised of several classes of patients: the low-class labor workforce (e.g. construction workers), the low/middle working class (e.g. taxi drivers), and high-end businessman (e.g. real estate / finance). This adds to the complexity of the health care and insurance needs / affordability of the patient segments.
I was able to meet with the Health Authorities of Abu Dhabi and Dubai to understand their perspectives on the system and needs for chronic care programs. In Abu Dhabi all residents are required to have insurance through their employers and in Dubai about 80% of the population is covered. All Emirati are 100% covered for all health services public or private through the government. I was extremely impressed by the quality of data from Abu Dhabi (as all people are covered the health data is tracked via insurance reimbursements) and we discussed the progression of diabetes in the population.
The graph below was one of the most frightening I’ve seen and demonstrates the “boom” of diabetes growth the population is destined to see without serious action.
Challenges in Talent Management
The UAE’s biggest challenge in healthcare is recruiting and retaining quality health care talent. One of the most interesting interviews I conducted was with Dr. Ashraf Ismail from Joint Commission International (JCI). He highlighted this issue and the impact it has on the quality of care at a systemic level. Although the country has some of the best facilities in the world, they require highly educated and coordinated health professionals to execute healthcare that is safe and effective. He stressed that safety is a culture that needs to be nurtured over time. This is difficult when the average physician and nurse stays in country for about 2 years before moving to higher-paying positions in other countries. In fact, many recruited healthcare workers view the UAE as a stepping stone to moving to countries in Europe or the US. This is a huge issue. Hospitals are constantly in the process of onboarding and training professionals and in most cases, the concept of “teaming” approaches to healthcare are lost entirely.
Another impact of this transient healthcare environment is that the general patient population (including Emirati) doubts the quality of care, despite the impressive infrastructure. Taken to the extreme, many patients travel internationally for healthcare services, especially larger procedures. Typically Expats return to their home countries (e.g. UK, India, Germany) for treatment. The Emirati are known for medical tourism outside the region as all of their health services are 100% covered if in a private facility (regardless of country). This is challenging on a number of levels because the lack of faith in the system creates a Catch 22 of lacking investment in the system.
It is also worth pointing out that the UAE is unlike many healthcare systems where the providers are consistent and the insurers change every few years. Instead it is quite the opposite, the insurers are primarily constant and the health providers are changing and varied.
Prevention Needs Recognition
For the majority of privately-covered patients (e.g. Expats) primary care is not covered or recognized as a needed investment. The purpose of health coverage is treatment and the majority of patients often wait until they are sick to seek treatment as a result. For diabetes specifically, early detection is varied among the community. The general awareness among nationals is very high for diabetes but few seek treatment early in the progression of their condition. Additionally, many expats from India, Pakistan and Western countries bring their propensity for the disease into the system as well.
I met with Zulekha Hospital in Dubai who is working to engage the community in awareness and education efforts for a variety of conditions it sees as high priorities in their patients. For example, their “healthy kidney” campaign has involved posters and providing free water bottles to all incoming patients to drive awareness. They expressed diabetes as an important area and gave suggestions on ways to reach patients in a community setting – mostly through the malls or festivals in country.
Cultural Perceptions and Care
For regional and national patients, a number of cultural perceptions significantly affect how healthcare is perceived. Patients’ conditions as well as motivation to seek help and treatment can be significantly affected. Mubadala is Abu Dhabi’s investment arm (you may have seen some ads for them during the World Cup?) and their lead for the healthcare sector expressed his experience with patient perceptions. The majority of patients with an Islamic background, for example, seemed to have a cultural acceptance of many diseases or conditions as if sent from God. With a belief that many events in life are fate-driven, it’s even more challenging to motivate patients to make changes in their lifestyle and health habits. I spoke with an internal medicine specialist and diabetes nurse at the International Modern Hospital that treats the largest number of Emirati patients outside in the private system. They stressed that it is difficult to get patients in the door and “even the concept of taking a pill” is a huge challenge for some. In an effort to reach patients more effectively, they tested some homecare concepts that failed completely, as many patients cancelled appointments last minute or were not home when the physician team was scheduled to arrive.
As I’ve mentioned before, having healthy options is a significant component of empowering patients to change their lifestyles. However, the culture must support the decision process that chooses these options over the status quo of inactivity (watching TV, sitting at the computer) and poor food choices (as it was described to me, “Krispy Kream is making a killing” in the UAE).
Opportunities for Diabetes Solutions
There is a lot to be hopeful for with respect to diabetes care in the UAE. It is already recognized as a national priority and once a strategy is in place, the funding and willpower is there to make it happen. I spoke with Dr. Ali Shakar, the previous Director General of the Ministry of Health for the UAE who spent a lot of time discussing past efforts and opportunities for the country (and what Project HOPE can do to help). He was interested in collaborating to develop a larger GCC effort that focused on patient empowerment and prevention efforts through Project HOPE’s “5 Steps to Self Care” and “Healthy Lifestyles” educational programs: one targeting the affected patient population and the other elementary students that represent the “future of the nation.”
Mubadala also emphasized their impressive investments in diabetes care to date – as well as plans to expand. Their work in the Diabetes Institute in the Empirical College, led by Dr. Maha Barakat, had been recognized internationally for its vision and success with execution. The center has driven so much volume that they are opening another facility in Al Ain, where 35% of their patients are commuting from for care. The facility provides all diabetes care and specialists in house (including lab and pharmacy services) with a range of specialty care including podiatrist, cardiologist, and weight management services.
I was also able to visit the Joslin Diabetes Center in Dubai which is a branch of a US-based chain that delivers top of the line care. I met with two diabetes educators there and the founder of the center who described the learning s they’ve had in the past 13 months since its opening. In the first year the facility was reserved exclusively for nationals and demonstrated the ability to reduce patients A1c levels in 3 months through treatment, lifestyle change, and close monitoring. The diabetes nurse walked me through their educational and treatment model.
She mentioned that they provide each patient a glucometer and strips for free and electronically “download” all glucose readings from the meters with each visit. This was fascinating to me as I’m not sure it’s a standard practice in the US. What happened was that patients actually started testing their glucose regularly and noticing changes based on their diet and medication (this also means patients can’t fake their glucose readings which can be a common issue otherwise).
They also highlighted a few challenges in the first year of care for the community. One, there are huge challenges finding nurses that have the technical skills and LANGUAGE skills to work with patients. This is not something that had occurred to me before. Because many healthcare workers are imported, many are not as proficient (or at all proficient) in Arabic. Could you imagine trying to talk about your emotional challenges with diabetes with someone who doesn’t even speak your language?
They also expressed some challenges with the “fate-centric” culture but that after time they were fairly compliant with care. Finally, I was shocked to discover that all of the model foods for carbohydrate counting and food-portion education were Western foods (e.g. green beans, rolls of bread). There was no hummus, falafel, pita, or anything that resembled what the majority of the patients consumed on a daily basis. This is a HUGE area for improvement – it’s not enough just to translate materials but the content of the education needs to be adapted to the culture itself. If patients don’t know that falafel has tons of carbs they are going to worsen the progression of their disease.
The UAE was by far one of my most productive visits with the majority of the interviews initiated from previous interviewees that supported the cause with the belief that Project HOPE can help. Influential interviews with Dr. Ashraf Ismail, Dr. Ali Shakar, Mubadala, and the health authorities of Dubai and Abu Dhabi provided a diverse perspective of the in-country priorities from a variety of stakeholders. The UAE’s unique location in the Middle East also makes them a strategic target for regionally-collaborated efforts that include the larger GCC region with similar patient needs. Additionally, the availability for national funding for pilots that could be successful in the region considering the national GDP per capita is larger in the UAE than the US (and almost double the US’ in Qatar).
I look forward to seeing what comes of Project HOPE’s work in this region as they focus on primarily government partnerships to facilitate program development and implementation, leveraging their expertise and experience with global diabetes efforts to date.