February 2020 update

Diabetes Alliance / NDoH February 2020 meeting

In attendance

  1. Itumeleng Setlhare: National Dept of Health (NDoH)
  2. Aadila Fakier, Magda Kriel, Nolwazi Sindane: BD
  3. Susie Snell, Belinda Lister, Nhlanhla Gumede: Roche Diabetes Care
  4. Juliet Fearnhead: Pick n Pay
  5. Patrick Ngassa Piotie, Jane Muchiri: University of Pretoria, Tshwane Insulin Project
  6. Peane Maleke, Mirroph Mashego: Boehringer
  7. Michael Brown: CDE
  8. Philip Marais: Momentum
  9. Chantall Nakin: Medtronic
  10. Heloise Steyn: Abbott
  11. Trevor McCoy: Sanofi
  12. Bridget McNulty: Sweet Life

Apologies from companies who couldn’t send representatives

  1. Sandhya Singh: NDoH
  2. Stephen Cook: OSSA
  3. Sundeep Ruder: SEMDSA
  4. Mark Norton: DisChem
  5. Natalie Brandt: Lilly
  6. Marianne Reid: University of the Free State
  7. Tshepo Maaka: Cabblow Studios
  8. Margot McCumisky: Diabetes South Africa

Purpose of the meeting

The goal is to put together a process map and action plan for the projects we will work on together this year (Diabetes Alliance and NDoH), with an emphasis on diabetes educational materials + training, and developing a Diabetes Directory for SA. 

Challenges

  • Ideal Clinics vs. other public clinics
  • Diabetes Registry for SA
  • CCMDD
  • Diabetes Alliance focus

Ideal Clinics vs. other public clinics

  • Itumeleng explained the difference between Ideal Clinics and other public clinics. More information on Ideal Clinics here: https://www.idealhealthfacility.org.za/ 
  • Ideal Clinics are assessed and scored, with the aim of improving the quality of care provided. They can be rated as silver, gold or platinum, with a feedback report. HR is a big problem in the primary healthcare sector: retaining quality staff is difficult. The incentive to be an Ideal Clinic is also to retain quality staff. 
  • What percentage of clinics are Ideal Clinics? Itumeleng will check.
  • Most of NDoH’s problems are around infrastructure: they don’t have the resources to attend to structural challenges. The intention is for all clinics to be ideal, that is going to assist with the NHI.

Diabetes Registry for SA

In order to solve the problem, we need to understand the scope of the problem of diabetes in SA: we need to know how many diabetics there are, and whether or not they are controlled.

Questions from NDoH:

  • Who’s going to own the registry? Who’s going to manage the resources?
  • Cancer registry has a budget to make it work: resources are going to be needed. Resources are necessary to make it a success.
  • Why do we need a registry?

Answers from Dr Patrick Ngassa Piotie, Tshwane Insulin Project at University of Pretoria

  • In the 2014 NDoH document for ideal clinics, it was outlined that a registry for all patients was a necessary tool to improve care. If you don’t measure it, you can’t manage it
  • We currently have the number of visits but not the number of patients – there might be 80% uncontrolled diabetics, but we don’t know it
  • The diabetes registry should be a facility resource, led by an Ideal Clinic NCD Champion. It could be paper based or electronic, but should be a management tool, owned by the facility.
  • If anyone else (universities, Diabetes Alliance etc) wants to access it, we would make an application.
  • At the moment, any data from the clinics goes to the NDoH office, it doesn’t go to the clinicians – they are working in the dark. You need to switch on the light first. There needs to be a system of some kind for the clinicians who are overworked to bear fruit. Otherwise when their patients develop complications they have no background.
  • There would need to be training on the objectives of the registry. To put it in and make it available is one step. The next step is to use it to forecast on medications required (supply chain), visits and compliance issues, and flag issues on patient management. We would need to equip the users to make it effective.
  • Why is it in the document if it isn’t being implemented?

Response from NDoH: 

  • NCDs are funded from our taxes. HIV has conditional grants, like PEPFAR and so on – they augment the public purse so that they can increase the management of HIV. As it is right now, we don’t have outside partners who are pumping funds into NCDs. 
  • What about sugar tax special projects? Sugar tax special projects funds are distributed across all health promotional materials. 
  • We recognise that you cannot manage the problem if you don’t know how big the problem is. The govt is trying its best to address this.
  • As it is right now, we don’t have enough nurses to attend to the patients. If we give them extra responsibilities when we don’t have enough nurses to attend to patients, that is an issue.
  • If we introduce this registry, it needs to be nationalised. Each and every facility would be obliged to complete the registry as part of the workflow.
  • As it is right now, all programs have got their own records that need to be filled in. NDoH recognises that we need to nationalise all these papers into one so that clinicians can spend more time with patients.
  • We also have the Strategic Plan for NCDs that is currently under development. At the end of that plan, we are going to have an M&E (Monitoring & Evaluation) framework. One of those things is monitoring control. According to the guideline, each patient must have an HbA1c to say whether or not they’re controlled.

Resolution:

  • Let’s agree on a system that can work in a South African context – maybe not computers, maybe not internet, as cost-effective as possible.
  • We can start on a smaller scale and once we find out it’s working we can scale.
  • Having the data at clinic level is really important. We can start with a pilot study, just a few clinics where we know people are champions.
  • Could we explore a diabetes version of MomConnect or something similar?

CCMDD

Magda Kriel, BD: Could we use the CCMDD project as a pilot?

  • CCMDD is for patients who are controlled: they can pick up 3 months treatment from the pharmacy and go to the clinic once or twice a year. 
  • How do they know if they’re controlled? UP collected data from CCMDD and non-CCMDD patients: 70% of CCMDD had an HbA1c over 7. To qualify as a stable diabetic patient, you have to have two fasting glucose levels in range (CCMDD guidelines). 
  • Majority of patients on the CCMDD programme shouldn’t be on it. But clinicians don’t have a picture. Data goes to NDoH.

Diabetes Alliance focus

Trevor McCoy, Sanofi: What is it that we need to do as a small action or initiative? 

  • What is the most pressing thing that we can assist the NDoH with? 
  • Let’s show that this forum has fundamentally contributed to a gap in the management of diabetes. What are the low hanging fruits that we can tackle as a group?

Response from NDoH:

  • Our issues are multi-sectoral: supply and demand. Patients are not empowered enough to make informed decisions – that is low hanging fruit to empower patients (education)
  • From the supply side, as a department: we are aware that there might be challenges around the implementation of our clinical guidelines. How do we strengthen the training of the clinicians so they do what they’re supposed to do?
  • For all this to happen, we need infrastructure.

Susie Snell, Roche: Education need among patients, education need among clinicians.

  • We’ve all missed the opportunity for consumer education: nobody has created grade 4 to 7 level education, which research shows is the level of health literacy of South Africans at public clinics.
  • Clinicians: SEMDSA is launching better primary care training, making moves towards solving those problems.
  • How do we train to equip and broaden the base of knowledge amongst healthcare workers? This training programme is more accessible and affordable than what’s currently available. It’s part of a strategy of building capacity around primary healthcare workers (nurses and doctors). 
  • It also focuses on NQF accreditation – mostly on diabetes nurse educators. 
  • NDoH is a bit sceptical about that because then remuneration will have to follow. We need to find a balance.

Diabetes education in schools?

  • How much is diabetes education in schools already? Schools have Life Orientation. Maybe that is one of the opportunities that we can explore – incorporating diabetes information into the School Health programme through the Dept of Basic Education: diet, healthy living, the reason why you have to pay sugar tax
  • If you educate children it can make a big difference. Perhaps a mnemonic that could be used for patients, nurses, doctors, children.

Summary of plans before May 2020 meeting

  • May meeting: Friday 8th May, 10am to 12pm (meeting invite to follow)

Activity: 

Solving the problem of education: education, training and empowerment for patients and HCPs.

Target: 

Patients and public healthcare professionals.

Outcomes: 

A project plan for diabetes education in public clinics, for both patients and HCPs.

Details: 

Review materials, create a package of what can be used, how it can be used and amended. Create an action plan for 2020 with deliverables.

Working group: 

  • Belinda Lister, Roche: project leader
  • Patrick Ngassa Piotie, TIPS: UP
  • Jane Muchiri, TIPS: UP
  • Magda Kriel, BD
  • Michael Brown, CDE
  • Trevor McCoy, Sanofi
  • Heloise Steyn, Abbott
  • Ankia Coetzee (SEMDSA): invite
  • Bridget McNulty, Sweet Life

Concluding remarks

  • NCD Strategy deadline is next week, second draft will have the diabetes cascade.
  • How do we take small steps towards ensuring we develop a Diabetes Registry that will give us an indication of how big the problem is? All of us in this room agree that that is an ideal state. The education project is starting the process.
  • Thank you to everyone who attended for dedicating their time to ensuring good things for the management of diabetes this year.

January 2020 update

Clear emphasis for Feb 2020 meeting with NDoH.

Structure the meeting with NDoH differently. We have a shopping list of what we’d like to achieve – let’s rank them before the meeting, so we can better prioritize 2020 activities. Then during the meeting, we can quickly put together a process map and action plan with input from NDoH. For example, the Alliance needs to decide when we need to start work on specific projects, what are the key deliverables by projects, etc. Proposal is for Trevor McCoy to facilitate this session.

Goals for 2020, with updated feedback from the Board

Diabetes educational materials developed in alignment with NDOH. 

CDE has developed materials that we can work from. It’s important to assess the level of health education and the language used in the educational materials. To this end, Sweet Life has made contact with Dr Marianne Reid at the University of the Free State who has developed a health dialogue model for patients with Type 2 diabetes in public clinics.

Training needs to be included as well as education: there’s no use educating patients if the nurses, doctors and healthcare professionals they interact with don’t have the same level of diabetes education. Healthcare professionals need to be able to support diabetes education. Training includes the core concepts of diabetes and could include the CDE online course.

Meter and strips available in public clinics to all people with diabetes.

It was suggested that this be removed from the 2020 goals. This is a procurement and management issue, which falls outside the scope of the Diabetes Alliance, and may present a conflict of interest with some of the companies supplying strips to government via contract or tender process. Once people with diabetes are educated, they can motivate and advocate for strips to be available.

Educational materials need to come first: without education, testing and strips aren’t very useful. Starting a diabetes registry is key so we know who we need to educate.

Start a Diabetes Registry in public clinics.

We need to find out from NDoH what this entails and the steps we need to take to start it. Perhaps it could be app based so that all those with a cell phone (even a very basic one using USSD) can use it: make it patient-centered.

Start planning earlier for World Diabetes Day

With the NDoH: involve parliament at the higher level and the linkage to care project started this year. We can get a timeline for when work on this needs to start.

Advocacy and Activism

It’s not only up to the Diabetes Alliance, we also need to hold patient organisations accountable for advocacy and activism. Diabetes patient associations need to motivate with advocacy and activism. Are there lessons to be learned from other patient association groups like TAC etc. Consider reaching out to activists like Zackie Achmat to get insights on how to strengthen patient voice and messaging.

We should emulate this:

Recruitment and empowerment came through a strong treatment literacy programme rooted in spreading the word from neighbour to neighbour, patient to patient. This patient-driven, community activism would become a hallmark of the movement.

December 2019 update

Constitution

We have written a Constitution for the Diabetes Alliance and shared it with the Board. There were no suggested changes to the Constitution, so we will now submit it along with the application for the Diabetes Alliance to become an NPO. The term for Board members will be two years, as suggested, so that we can ensure continuity.

Volunteers for open Board positions

Belinda Lister has volunteered to be Secretary, Michael Brown has volunteered to be Vice-Chairperson. We still need a Treasurer but as there are currently no finances, this is not urgent.

Method of interaction with National Dept of Health (NDoH)

No complaints / suggestions received from the rest of the Diabetes Alliance so we will inform Itumeleng and Sandhya from NDoH that the Board will be the primary contact between meetings.

Meeting dates for 2020

Feb, May, Aug, Oct 2020. We will ask Itumeleng to suggest a February date that works for NDoH and work around that.

November 2019 update

The first Diabetes Alliance Board meeting was held via Zoom call on Thursday 13th November 2019. Here are the highlights from the meeting.

Diabetes Alliance Board

The Board consists of the following volunteer members:

Formal structure of the Diabetes Alliance

What formal structure should the Diabetes Alliance be?
An NPO: NCD Alliance is international and an NGO, so the South African version would be an NPO (non-profit organisation). There are 3 options for NPOs: voluntary association, non-profit company or trust. Diabetes Alliance would be a voluntary association.

We will ask DDG Yogan Pillay about the special projects fund of the sugar tax and if the Diabetes Alliance can apply for funding from it.

Criteria for membership to the Diabetes Alliance 

Criteria thus far have been any association, organisation or company working with diabetes in South Africa. Agreed on that as long as a company is contributing to diabetes in South Africa in some way, they can be part of the Alliance. The Board can address this as necessary.

2020 goals

Diabetes educational materials developed in alignment with National Department of Health (NDoH). Sweet Life to work on a pilot project in Western Cape in alignment with Patrick / TIP in Gauteng.

Meter and strips available in public clinics to all people with diabetes.

Start planning earlier for World Diabetes Day with the NDoH – involve parliament at the higher level and the linkage to care project started this year.

Start a Diabetes Registry in public clinics: at the moment when you get to a facility nobody can tell you how many diabetics there are, and if they’re controlled or uncontrolled. It’s also all paper based.

Method of interaction with the NDoH

  • Ask the Diabetes Alliance what they would like. Suggest the board being primary communication with NDoH, with monthly written updates on Diabetes Alliance website (www.diabetesalliance.org.za/updates).
  • Want to keep momentum going with the NDoH: show a pipeline of projects.
  • Quarterly newsletter sent out with a group of topics we’re working on and what we want to highlight. 
  • Dates in diaries for quarterly meetings in early Jan 2020.