Diabetes education research: February 2020

Sweet Life is South Africa’s diabetes community: a space to share information and advice about living well with diabetes, both here on the website and on Diabetic South Africans. But we’re also involved in diabetes education research – a big focus for 2020. Each month, we’ll be sharing the research we’ve done into diabetes education in public clinics, in the hopes that it helps someone else looking for answers to diabetic questions! This is the February report, be sure to scroll to the bottom of the page for the other months.

February focus:

To connect with as many people as possible who have done diabetes education research and training projects in South Africa, and find out what they’ve learned that may be applicable. To look at mhealth and diabetes research, and get a better idea of behavioural change research.

Relevant mhealth and diabetes education research:

• Assessing the impact of mHealth interventions in low- and middle-income countries – what has been shown to work?
  
• Mobile phone text-messaging to support treatment for people with type 2 diabetes in sub-Saharan Africa: a pragmatic individually randomised trial
  
• SMS-text adherence support for patients with hypertension (*StAR study)

BBCC / motivational interviewing research:

• The case for behavioural change counselling for the prevention of NCDs and improvement of self-management of chronic conditions
  
• Evaluation of a training programme for primary care providers to offer brief behaviour change counselling on risk factors for non-communicable diseases in South Africa 

Language and diabetes

• Language and diabetes: NHS England

IDF NDP Guideline

IDF NDP Guideline: International Diabetes Federation National Diabetes Programme Guideline

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Notes from diabetes education research:

mHealth:

• The World Health Organization (WHO) has defined mHealth as ‘Medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants, and other wireless devices’
• Although low-cost mobile devices provide new and potentially transformative opportunities for all those working to improve health outcomes, nevertheless, to date, there is little evidence on mHealth interventions that have been implemented in LMICs and assessed in terms of specific outcomes.
• These various mobile technology functionalities offer a range of opportunities for mHealth interventions, from health promotion via SMS texts and interactive voice response campaigns and content to mobile phone-based imaging (which has potential diagnostic capabilities).
• As a consequence of high uptake of mobile phones in LMICs, mobile-based educational schemes have an opportunity to enhance health behaviour, and therefore health outcomes, at the population level. Educational services and campaigns might aim to increase target groups’ knowledge and shift behaviour and norms around different health issues, services, and products.
• Health records are generally problematic in LMICs… Electronic health records contain key patient conditions, results, and treatment plans. Access to this information facilitates more effective treatment.

There seems to be a lot of potential for mHealth if it’s the right format and in the right language and tone. It’s interesting to note that health literacy will also play a huge role here in ascertaining the right language to use in an mHealth intervention. 

mHealth projects

• This University of Oxford project is due to end in March 2020 (since October 2015): will be interesting to find out the results. I’ve reached out to the lead author.
  
• The information-only adherence support group members were sent messages to motivate collecting and taking medicines and to provide education about hypertension and its treatment.
• This trial has demonstrated that a behavioral intervention to support adherence to blood pressure treatment delivered via SMS text message can improve adherence and may modestly decrease blood pressure at 12 months.
• The delivery of predefined messages can be achieved by an automated system consistently and without the need for additional training programs for clinical staff.
• The optimal frequency of the different categories of text messages; the incremental costs of modifying messages so that they remain effective; and the wider implementation of these messages in different communities, for different long-term conditions, and for patients with multiple conditions need further study.

The results from SMS information messages were underwhelming, but it does show that behavioural intervention via mobile is possible. WhatsApp could be vastly more useful because it provides an interactive interface, rather than just top-down information.

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Brief Behaviour Change Counselling (BBCC) /
Motivational Interviewing (MI)

• Brief behaviour change counselling (BBCC) that is integrated into routine health care has been shown to be effective in helping patients modify risk behaviours for non-communicable disease (NCD), improve self-management of chronic conditions, as well as produce clinically meaningful improvements in biological outcomes.
• Unhealthy lifestyle-related behaviour is a key factor underlying much of the South African burden of disease and primary care morbidity.
• The need to shift to a patient-centred approach to care, which emphasises the importance of actively engaging the patient in decision-making about his/her health, is seen as central to the implementation of a new model for chronic care.
• Barriers include language barriers, a lack of support and resources, as well as a lack of time and poor continuity of care in a system geared to provide care for acute episodic illness rather than ongoing care for chronic conditions
• Conceptually, MI may also not be that accessible for low- to midlevel health workers without a tertiary education. In the context of health services in low- and middle-income countries such as SA, which rely on lay counsellors, community health workers, health promoters and nurses to provide the bulk of health education and lifestyle counselling, adaptations of MI may be more appropriate.

One of the biggest considerations in diabetes education and training is lifestyle behaviour. This isn’t going to happen without actively engaging the patient. It’s interesting to note that one of the main barriers is a system that prioritises acute episodic illness. 

The 5 A’s:

1. Ask: ask about, assess and document behavioural risk factors.
2. Advise: provide clear information on risk and brief, personalised advice; express social support for change.
3. Assess: allow the individual to assess the personal relevance of information and determine readiness to change.
4. Assist: assist the patient in planning for change, acquiring behavioural skills and confidence to succeed; prompt the patient to seek social support; provide supplementary education and motivational materials and medical treatment, where appropriate.
5. Arrange: schedule follow-up contact to provide ongoing assistance and to adjust plan as needed; refer to specialised services (if necessary) and community-based resources.

How would this look in a time-poor context where the HCP only has 15 mins with each patient?

How does this look in South Africa?

• Re-designed the current training for PCPs in South Africa, to offer a standardized approach to BBCC based on the 5 As and a guiding style.
• whether PCPs believed that the new approach could overcome the barriers to implementation in clinical practice and be sustained, and their recommendations on future training and integration of BBCC into curricula and clinical practice
• Although PCP’s confidence in their ability to counselling improved, and some thought that time constraints could be overcome, they still reported that understaffing, lack of support from within the facility and poor continuity of care were barriers to counselling.
• It is clear that to incorporate BBCC into everyday care, not only training, but also a whole systems approach is needed, that involves the patient, provider, and service organisation at different levels

The GREAT diabetes project at the University of Stellenbosch has managed to incorporate elements of BBCC into their training. Lack of support is a huge problem.

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Language and diabetes

Why is language important?

• HCP approach needs to be collaborative and inclusive, not judgemental;
• Diabetes care is changing – and if we as healthcare professionals want to make a difference, it is the building of relationships and respect which places the patient at the heart of that change which will take it to the next stage.
• At its best, good use of language; verbal, written and non-verbal (body language) which is more inclusive and values based, can lower anxiety, build confidence, educate and help to improve self-care.
• People who are ashamed of a condition will find it much harder to engage and manage that condition proactively.

Language principles:

• Use language (including tone and non-verbal gestures) that is:
    – free from judgment or negative connotations, particularly trying to avoid the threat of long-term consequences or scolding (‘telling off’); is inclusive and values based language.
    – person-centred, (also known as ‘personfirst’) to avoid labelling a person as their condition
    – collaborative and engaging, rather than authoritarian or controlling.
• Avoid language which attributes responsibility (or blame) to a person for the development of their diabetes or its consequences.
• Listen out for a person’s own words or phrases about their diabetes and explore or acknowledge the meanings behind them.

The issue with compliance

• Remember that having diabetes does not make a person more likely to be ‘compliant’ with health messages (for example, eat healthily or exercise) compared to someone without diabetes.
• Become aware of use of terminology such as ‘compliant/non-compliant’ in relation to a person with diabetes and try to find out about their current situation and how it might be affecting their diabetes.

Shame around diabetes

• If a person who has diabetes refers to themselves as a ‘bad diabetic’, or other similar phrases, this may suggest that someone has been made to feel ashamed of their condition, for example during an episode of hypoglycaemia or their self-management.
• The language of consultations between healthcare professionals and the person with diabetes can be detrimental if we continue to focus on the ‘good’ or ‘bad’, or ‘failing to’ carry out certain self-management activities.
• Shame may prevent the person living with diabetes confiding in their healthcare professional or accessing care for fear of judgment or a negative response.
• Be sure to respond to words or behaviours that imply shame or embarrassment. For example: ‘There is no such thing as ‘good’ or ‘bad’ diabetes’. Or, ‘You’re not the sum of your diabetes numbers, it’s your efforts that matter most’.

Whatever format the diabetes education ends up taking, it is so important that this information is kept in mind when it comes to language so that it can be effective as possible.

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IDF NDP Guideline: International Diabetes Federation National Diabetes Programme Guideline

A National Diabetes Programme is a systematic and co-ordinated approach to improving the organisation, accessibility, and quality of diabetes prevention and care which is usually manifest as a comprehensive policy, advocacy and action plan covering the


• Main types of diabetes ie type 1 diabetes, type 2 diabetes and gestational diabetes

• Whole continuum of care from primary prevention to treatment and palliative care   
• Resources, services and systems that support prevention and care

National Diabetes Programmes must be documented and have stated goals and objectives, supported by a strategic plan, specified timeframes and milestones and dedicated funding, and a means of evaluation. Approval and endorsement of, and leadership from the Ministry of Health is vital.

• A strong National Diabetes Organisation representing a combination of professional and consumer (patient) organisations can be a powerful force in lobbying for and driving improvements to the organisation, delivery and quality of diabetes care and prevention.
• It would be helpful to conduct a Situation and Needs Analysis, and a Baseline Prevalence Survey, but this is beyond the scope of Sweet LIfe Diabetes Community.
• Some very helpful information under ‘Addressing the Problem’, particularly around community awareness campaigns. In the SA context, we need to focus our attentions in an even more simplified way for 2020 before we step up to this level of awareness. We need to get the basics right before we expand to more complex information.
• Much of the rest of the document is better suited to government and how to develop a governmental diabetes strategy than to Sweet Life or the Diabetes Alliance.

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Interviews:

Prof Bob Mash: GREAT diabetes project (University of Stellenbosch)

• GREAT: Group empowerment and training for diabetes. Collaboration with NDoH, with funding from WDF to train 10 primary care facilities
• Through NDoH so has to go through provincial, difficult to get them to commit to dates. 
• MRC funding to research the implementation.

Are the primary care providers trained in behaviour change counselling as part of their GREAT training?

Motivational interviewing is embedded into the sessions. 

Motivational interviewing is a counseling method that helps people resolve ambivalent feelings and insecurities to find the internal motivation they need to change their behavior. It is a practical, empathetic, and short-term process that takes into consideration how difficult it is to make life changes.
Group motivational interviewing: a guiding style. Each session is constructed in a way that embeds the guiding style.

The elements are: 

• Collaborative
• Evocative: getting from the people in the group their ideas for solutions, their ideas of what they can do to change
• Empathic – listening to and recognising their perspectives and realities
• Respectful – respect their choice and control
• Focused – not just some sort of nice chat, there’s structure and process.

Key communication skills: elicit – provide – elicit

What do you want to know – what can I give you – what are you going to do with it?

What is the health literacy level like?

• Facilitators reasonable. Health promoters higher than community health workers.
• Haven’t had any reports that the facilitators have struggled to understand the material.

Patient education materials: iChange4Health

• Feedback was that patients don’t like flimsy 1 page pamphlets, not enough depth. When pamphlets are given as part of a conversation, when the person actually wants it, then it works
• They don’t work if they’re thrust on people.
• Posters don’t work, they turn into clinic wallpaper.

Pre-service training not designed to facilitate behaviour change. 

5 A’s to behaviour change counselling – we tweaked it a bit

1. Ask
2. Alert
3. Assess
4. Assist
5. Arrange

• Embedded the guiding style into that. Developed an 8 hour training for primary care providers: nurses and medical officers.
• Also creating an online course for that. Originally developed around NCDs – 4 key behaviours are healthy eating, physical inactivity, tobacco and alcohol, and adherence.
• Research project trying to put all these together.

Would this work nationally, or is it too resource intensive?

Once people are trained to do it (those who are already employed by NDoH) it’s not resource intensive. There are certain resources provided (card games, flip charts, handouts) and it’s nice to have patient education materials, but other than that it’s just the training.

Have you had any success figuring out the key issues you mentioned?

(Who will facilitate the sessions, which patients will be targeted, where will the sessions be held, how will GREAT be integrated with patient flow, how will sessions be scheduled to coincide with usual attendance and how will educational resources be provided on an ongoing basis)

These are organisational issues for each clinic to deal with. The trouble is that health promoters are relatively powerless. It’s important to bring along higher level professionals and managers: health promotion officers or nurses. 


Which 3 messages around diabetes would have the greatest impact for SA?

1. Portion size is the biggest issue: the carb mountain. But what do you replace it with that’s cheap and filling and delicious? 
2. Physical activity is second, but food is number 1.
3. The fact that Type 2s may need insulin. There’s a psychological insulin resistance from patients and practitioners. For patients it’s the fear of needles, for HCP it’s the amount of time and effort required to get people started and on the right dose.

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Loren Human: Motivational interviewing (University of Stellenbosch)

• How you share information is what’s important
• How is it internalised?
• Motivational Interviewing (MI) gives an overview of the technique, Brief Behavioural Change Counselling (BBCC) is a snippet of that.
• It’s a way of facilitating communication that changes the outcome of the communication.
• “I’m with and for you” – motivation to change is elicited.
• There is so much evidence behind patient centred care, but we need to train up doctors, nurses, counsellors. 
• It can be short, one-day courses.

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Sebastian Thompson: Behavioural scientist (Lake Innovation)

Personas and motivation

• It’s probably not about 3 consistent messages for every diabetic / nurse / doctor in SA. Homogenising messages doesn’t work. You have to look at frameworks rather than cylinders.
• Think of a doctor who could send details to a chat bot: female, 35, family history, living in X, glucose of Y, weight of Z. What interventions does she need?
• We need to look at the different diabetic personas: different types of people with different behaviours. They’re going to be responsive to different behaviours. What is the low hanging fruit for these people? Maybe they’re on the cusp of taking medication, maybe they’re not taking it because of an upset stomach. In that case, the answer is to take it at night: put the tablet out when you cook dinner and take it after dinner. One nugget that will convert one particular type of person.
• Also very helpful to look at the BJ Fogg model. 

• What is medication? It’s a routine, once-off behaviour that you start and keep going. Eating 10 slices of white bread is a currently routine behaviour that you want to stop.
• The first step to changing behaviour is finding out if someone wants to change it. Do you want to take sugar out of your tea? Step 1. Can I show you how you might be able to do that? Step 2.
• The trouble is that if it’s coming from a doctor, there’s a top-down approach and a right and wrong answer, so you’re already off on the wrong foot.

Digital / app solution

• Good idea to chat to the Praekelt guys who helped build MomConnect. WhatsApp based information for a common user journey (pregnancy or diagnosis).
• The system uses AI and real-life nurses: the nurse captures the conversation and gives answers – what it’s actually doing is generating messages for the nurse that they can adjust as necessary.
• This is where having personas of diabetics would be helpful: socio-economic, job, family, connectivity, age, race
• Build up design trees.
• Human to human counselling is ideal but unlikely to happen, even once every 3 months.

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Prof Priscilla Reddy, Dr Natisha Dukhi, Ronel Sewpaul (HSRC) 

• Data from November shows that it’s the “Worried Well” that went to get tested – suspected something was wrong.
• Diabetes is a priority for this year: work together to find the right interventions.

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Prof Joel Dave: Head of Endocrinology at Groote Schuur and UCT

Three things killing our diabetics:

1. Non compliance. Just take your medication as prescribed. Why don’t people take medication? Frustration, pain, forgetfulness, upset stomach. Easier to take the path of least resistance.
2. Sugar. Stop drinking sugar tea. Average 6 teaspoons of sugar x multiple cups of tea. Stop Coke and Jive.
3. Bread. Cut down on bread: 10 and 20 slices of bread a day.

Then comes exercise, but the trouble with suggesting walking is that it’s not always safe to walk in home areas. 

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Breadcrumbs: Behavioural Linguistics

Leigh Crymble: Breadcrumbs

• The simpler the language, the more credible. If something is credible, it’s more persuasive.
• Financial literacy in SA is Grade 8: language has to be simple and plain.
• Perhaps a mnemonic to help everyone remember the diabetes basics (like BRAT for a stomach bug: Bananas, Rice, Apples and Toast)
• Also consider spreading messages through the community:

• Church groups
• Schools (colouring in competitions with healthy messaging)
• Community leaders

How do you know if it’s working?

• Put together a community focus group (doesn’t have to be big). Ask what’s being spoken about, what the complexities are – the focus group gets to position themselves as heroes.
• Sit with various ages and education levels. Have them read something and then explain what it means. The way they interpret it (if the information is correct) is the words you should use.
• Perhaps a system of diabetes heroes / CHW champions: give them a resource pack of extra information, they become heroes in their community, give them vouchers for snacks for meetings.
• Use social proofing to make diabetes more acceptable: everyone is managing it, I can cope with it too.

Mobile option:

• If it’s a mobile solution that requires data, maybe you could get Vodacom or MTN involved. Sign up and get a free data bundle. 
• How could you force people to pay attention and do what they’re supposed to do?
• What are the touchpoints that will follow the visit?

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Praekelt: MomConnect

• MomConnect is a messaging platform at its heart. Not a website or an app. It doesn’t need to be downloaded.
• Launched in 2014 as an SMS service providing maternal health messaging and support. Difficult to purely engage with users via SMS. Not sustainable from a costing perspective. WhatsApp (WA) is the largest social media platform in SA. 
• In 2017, entered into an agreement with WA on how to engage with moms on maternal health.
• Tool called Turn, almost an engagement tool that leverages platforms like WA to create an efficient way to engage with individuals. It incorporates natural language understanding and machine learning to match questions with appropriate responses. 
• A human is given options from AI and sends the best response back to the mom. 
• It’s a very engaging service. Reach out via SMS or WA with queries or complaints / compliments about clinics. Report things like medication out of stock.
• MomConnect is for pregnant women and new moms up to 5 years old. 3 million moms since 2014.
• NurseConnect engages with HCW in SA – 30k nurses. Similar service, engage via SMS or WhatsApp, also a mobi site. Content related to professional service. 

Can pregnant moms WhatsApp questions and get answers?

There’s a bank of FAQ built up in the back end. When a query comes through, machine learning and natural language process suggest an answer that goes to a human. The human is always in the loop, particularly with healthcare. 

The FAQ were edited to be more South African and rendered for the channels needed. You can’t send a paragraph back on WA, you can engage in rich media. Can use pictures, audio notes. We get a ton of different types of messages coming through from moms. They see MomConnect as their trusted friend. It’s a service and a companion to help them with their maternal health journey. Content needs to be engaging over a long period of time.

Sometimes we need to refer to the clinic – for specific medication and symptoms. We’re not providing medical advice.

How did you get the clinic sisters involved?

Because it’s with NDoH, the nurse will ask a pregnant mom if she wants to be signed up to MomConnect. There’s a USSD code to register to receive maternal health messages. 60% receive on WA rather than SMS. Why? Basic feature phones are on SMS, you need data to respond back to WA. But you can access information that’s on WA already. Moms are 6 times more likely to reach out on WA, 3 times more likely to stay engaged. 

How did you deal with low levels of health literacy? At what level did you pitch the English?

MomConnect is in all 11 official languages. The content itself is limited, so we sometimes send in English and receive queries in a different language. It has to be edited, all the information is evidence based and pre-vetted. It’s then edited to the right level: simple terms and the right advice. Tone is the most important thing actually. All that content needs to be loaded onto the system. 

Is there a framework that could be adapted to diabetes information?

• Turn could help with setting up behavioural change journey.
• The WHO Be Healthy Be Mobile programme is interesting. Their mandate is to develop content toolkits to support government with managing NCDs. How to upload content set to mobile based platforms. They are primarily SMS based, but want to do a pilot on WA.
• Design it to support long term engagement and stability.

What we would look at it is:

• Using Turn, build a prototype for SMS and WA. 
• Design it, undertake a phase of discovery, understand the landscape, any digital tools available
• Develop a prototype of what it would look like with a small portion of the population on what the engagement experience is like, do they feel they can connect with something like this
• Build what this would look like as an MVP
• Run it as a pilot, undertake feedback with users, iterate and optimise
• Similar type of platform as MomConnect
• Start with broader information and get more specific as you go along – build up an FAQ bank. 
• Help desk operator in place, based at NDoH. 
• What is our theory of change here, what are the outcomes, how are we going to design something that will make a broader difference?
• When we’re putting together a prototype, which behavioural outcomes are there to incorporate? 

Funders: possibly Novartis Foundation

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Next steps: March

1. Read the WHO Be He@lthy Be Mobile handbook for diabetes.

This handbook has been prepared by an international group of experts in mDiabetes for WHO and ITU, to be used by governments, ministries and other relevant national organizations. The main objective of this handbook is to provide evidence-based and operational guidance and resources to assist countries and governments in putting together a detailed work plan for the development and deployment of a national level mDiabetes programme to prevent or control diabetes through healthy living.

2. See the GREAT diabetes project in action at Symphony Way clinic.
   
3. Work with the Diabetes Alliance working group to create an NDoH project plan for diabetes education in public clinics, for both patients and HCPs (deadline 8 May 2020).

The 2020 Diabetes Education Project by Sweet Life is supported by Pick n Pay and BD.

Read the whole diabetes education research series:

• January 2020
• March 2020
• April 2020
• May 2020
• June 2020
• July 2020
• August 2020
• September 2020
• October 2020
• Nov / Dec 2020