Tag: doctor–patient relationships

Celebrating Aurélien Breton: A Champion of Patient Access to Innovation in South Africa

In a world where healthcare challenges are evolving at an unprecedented pace, innovative leadership has become the cornerstone of transformative progress. 

Visionaries such as Aurélien Breton exemplify this dynamic approach, blending passion with strategic insight to drive meaningful change. By placing patient wellbeing at the heart of their mission, these leaders are not merely navigating the complexities of the healthcare landscape, but redefining it. 

Their commitment to advancing patient access and optimising care underscores a powerful message: that true leadership in healthcare is about more than just responding to current needs, but anticipating future demands and crafting solutions that elevate the quality of life for patients around the globe.

For nearly five years, Aurélien has been a driving force within the Innovative Pharmaceutical Association of South Africa (IPASA), serving as a cornerstone of the Executive Committee and leading the Patient Access to Innovation (PAI) Working Group. 

His journey with IPASA reflects a deep commitment to improving patient access to life-saving medicines, tackling the significant challenges within South Africa’s healthcare system, and advocating for those most in need.

“For me, being a part of IPASA means engaging in a collective effort that extends beyond personal or corporate interests to enhance the broader healthcare landscape in South Africa,” says Aurélien.

A native of France and current Managing Director of Southern and Eastern Africa at Servier, Aurélien’s passion for healthcare brought him to South Africa in 2019 driven by a desire to contribute to something greater than himself and to make a meaningful difference in the lives of all South African patients. 

“I am a firm believer that a true leader is someone who wakes up every morning driven by a deep sense of purpose. For me, that purpose is ensuring access to innovative medicines for those who need them most. Our work in providing medicines transcends mere numbers; it profoundly impacts the lives of patients and their families, enhancing their quality of life and serving a greater purpose beyond business,” he adds.

While Aurélien’s role has evolved since joining IPASA, his mission has remained constant – to address barriers to patient access and help patients benefit from innovative medicines. Under his leadership, the PAI Working Group has engaged key stakeholders, including government bodies, medical schemes, and patient advocacy groups, to improve access to innovative treatments. 

Aurélien admits that despite engaging with all relevant stakeholders, progress has been sluggish. He attributes this to the healthcare environment at large, where excessive processes and regulations dilute responsibilities and hinder effective action. 

“Constructing a path to improvement is challenging due to unresponsiveness and barriers, including a lack of urgency from some stakeholders and uncertainty surrounding the National Health Insurance (NHI) scheme. This has slowed efforts to enhance patient access to life-saving medicines. We must focus on refining the existing system rather than waiting for a complete overhaul.”

Despite these challenges, including others such as infrastructure, access to innovative medicines and their associated high costs, Aurélien and the team have made significant strides. Most notably, the Group has been instrumental in fostering strong engagement between medical schemes, the Council for Medical Schemes, patient advocacy groups, and others; while several prominent medical schemes, such as Discovery Health and Medscheme have entered into agreements that could improve access to innovative medicines in the future. 

Aurélien is quick to credit the collective efforts and dedication of the PAI Working Group for the progress achieved during his tenure, acknowledging their willingness to invest time and energy in something greater than themselves. He recognises the significant long-term commitment required, noting the burdensome and relentless nature of the work, which can lead to discouragement or frustration. Despite facing hurdles, the PAI Working Group has met these with resilience and determination to drive progress and effect meaningful change.

While Aurélien has helped achieve significant strides in improving patient access across the South African healthcare landscape, he is eager to broaden his impact by extending his expertise to other countries where he will continue his work in improving patient access.  

“While I am sad to be moving from South Africa, I believe I have helped set the foundation for change in the country. Even though the registration of innovative medicines has improved, access to these potentially life-saving medicines and increasing the public visibility of patient voices remains a challenge. I implore everyone involved to continue working tirelessly to break down these barriers, ensuring that all patients can benefit from the innovations that have the power to transform their lives. The work is far from over, and we must maintain our commitment to improving healthcare access and outcomes for all,” concludes Aurélien. 

Reflecting on Aurélien’s contributions, Bada Pharasi, CEO at IPASA, adds: “Aurélien’s commitment to improving patient access and healthcare innovation reflects a deep-seated passion for making a tangible difference. As he embarks on this new chapter, we, as IPASA, thank him for his commitment and drive to contribute positively to the healthcare landscape in South Africa. His influence will undoubtedly continue to inspire and impact many in the industry.”

Uniting in a Shared Vision for Improved Patient Safety

Talk to your patients about safe, effective use of medicines

Photo by Cottonbro on Pexels

Approximately one in ten patients experience an adverse drug reaction during their care1. This can lead to serious harm or even death. Sanofi is committed to reducing these numbers by working with healthcare practitioners to create a culture of patient safety.

“Patient safety is a top priority for Sanofi,” says Yusuf Dawood, Multi-Country Safety Head for Sanofi Southern Africa. “We believe that patients should be essential partners in their healthcare journeys, and we are committed to working with healthcare professionals alongside their patients to ensure optimal therapeutic outcomes. We call on all healthcare practitioners to join us in raising awareness of patient safety. By working together, we can advocate for improved communication and reduce patient harm.”

Here are some key tips for healthcare practitioners on how to improve patient safety:

  • Ask patients about their concerns and listen to their feedback. They can provide valuable insights into their own health and well-being and by engaging them, healthcare practitioners can ensure that potential issues are detected as soon as possible and handled appropriately.
  • Provide patients with clear and concise information about their care. Patients need to understand what their diagnosis is, what treatment options are available, and what the benefits and risks of each option are. They also need to know what to expect during and after their treatment, and how to manage any side effects or complications. By giving patients accurate and easy-to-understand information, healthcare practitioners can empower them to make informed choices about their care.
  • Communicate with patients and other members of the healthcare team. Use simple and unambiguous language, avoid jargon and acronyms, and confirm that the patient has understood the information they have been given. Use tools such as checklists, handovers, and feedback loops to ensure that the information they share is complete and accurate.
  • Follow safety protocols and procedures. Healthcare practitioners need to adhere to guidelines, policies, protocols, best practices and standards of care established by professional bodies and regulatory authorities, which have been designed to prevent or minimise harm to patients.
  • Report issues immediately. Report any patient safety issues to the appropriate authorities in the interest of public safety. Report any medication-related patient safety issues to the relevant pharmaceutical companies. This enables companies to continuously monitor the benefit-risk profile of their products and ensure the safe use of medicines.

“Patient safety should be a top priority for healthcare professionals and pharmaceutical companies because the goal of both sectors is to improve and protect the well-being of individuals,” says Dawood. “When safety is compromised, it not only jeopardises the health and trust of patients but also undermines the credibility and integrity of the entire healthcare system. By working with pharmaceutical companies like Sanofi, healthcare professionals can provide real-world feedback on drug efficacy and side effects. This collaborative approach ensures that treatments are both safe and effective.

Join Sanofi in championing patient care. Let’s collaborate, communicate, and make every patient’s journey safer.

Reference
1. Ribeiro, M. et al. (2018) ‘Increase of 10% in the rate of adverse drug reactions for each drug administered in hospitalized patients’, Clinics, 73, pp. 1–6. doi:10.6061/clinics/2018/e185.

How Well do Patients Understand Probabilities in Medical Results?

Photo by Cottonbro on Pexels

To communicate medical results to patients, who may find them hard to understand, is a challenging task – especially when it comes to making sense of statistical information. An interdisciplinary team of scientists has published a study in PLOS ONE investigating how communication between doctors and patients about actual risks can be made more effective.

“Even doctors sometimes have difficulties in determining the right predictive value. And if the data is difficult for the doctor to interpret, it’s even harder to communicate the information accurately to patients in a way they will understand,” says study author and mathematics educationalist Karin Binder.

The following case will serve as an example: A patient has just received a conspicuous sonographic finding of his thyroid. Does this mean he has thyroid cancer? Not necessarily, because there is a certain probability that the result of the examination will be positive even though the patient does not have thyroid cancer.

To explain to patients what the statistical picture looks like after such a positive test result, there are two approaches. One of them requires some lateral thinking, while the other is much easier to interpret from the patient’s perspective, as the researchers were able to demonstrate.

Bayesian vs diagnostic information

The commonly used Bayesian approach proceeds from the number of patients who actually have the disease. First of all, the doctor explains how frequently the disease occurs overall – for example: “out of 1000 patients, 50 have thyroid cancer.” Then the doctor lays out: a) for how many of these patients with thyroid cancer, the test result is positive (20 out of 50) and b) how many people who do not have thyroid cancer nonetheless have a positive test result (110 out of the remaining 950).

This is generally the information the doctor either knows or can easily research. Positive tests as a proportion of people with the disease is also known as sensitivity – a term that may be familiar from the COVID pandemic, when it was used, for example, as a quality criterion for rapid tests. Unfortunately, however, positive tests as a proportion of people with the disease is often confused with people with the disease as a proportion of positive tests! And these two percentages can greatly differ depending on the situation.

So what do the numbers quoted above mean in relation to a person with a positive test result? How many people who test positive actually have the disease? If for you the answer is not immediately apparent, you are not alone: Without further information, only 10% of participants were able to calculate how many people with positive results actually had the disease.

“Diagnostic” communication of information proceeds very differently: First of all, the doctor explains how many patients have positive test results, irrespective of whether they actually have the disease or not. In our example, this would be 130 people with a conspicuous thyroid ultrasound (out of 1000 people examined). Next, the doctor explains how many of these people with positive tests actually have the disease (20 out of 130) and how many of the people with negative test results have the disease (30 out of 870).

The relevant information is contained here directly and without the need for mental arithmetic: If my result is positive, then the probability is a 20 out of 130 that I actually have thyroid cancer. When communicated in this form, 72% of study participants were capable of arriving at this conclusion, compared to 10% with the Bayesian approach.

How to best communicate statistical information?

“With Bayesian communication, moreover, participants were considerably slower in reaching the correct result, if they got there at all,” says Karin Binder. “And in busy doctor’s offices and hospitals, this time is often not available.” The team of authors therefore calls on doctors to use diagnostic information communication more readily in future. This would go some way to avoiding confusion, misinterpretation, and wrong decisions.

It would be even better, however, to take the time to give patients a full picture of the situation, containing both diagnostic and Bayesian information. Only this can explain the surprising phenomenon whereby even a medical test with outstanding quality criteria can have very limited predictive power under certain circumstances (eg, routine screenings).

Source: Ludwig Maximilian University of Munich

1 in 5 Patients at High Cardiovascular Risk Refuse Statins, Especially Women

Photo by Priscilla du Preez on Unsplash

Heart disease is the leading cause of death worldwide, and statins are a vital medication against it – but they are notoriously unpopular, leading to poor adherence. Investigators from Brigham and Women’s Hospital conducted the first population-based study on patients’ nonacceptance of statin therapy recommendations, and published their results in JAMA Network Open.

The study found that in patients at high risk of developing cardiovascular disease, over 20% refused to take statin medications. They were particularly surprised to see that women were about 20% more likely than men to refuse statin therapy when it was first suggested by their physician, and 50% more likely than men to never accept the recommendation. The study also showed that all patients who refused statin therapy developed higher LDL cholesterol levels, likely increasing their risk even further.

“Our study highlights the alarming number of patients who refuse statins and signals that physicians must have discussions with patients about why,” says Alex Turchin, MD, MS, an associate professor at Harvard Medical School and director of quality in the Brigham’s Division of Endocrinology, Diabetes, and Hypertension. “We need to better understand what our patients’ preferences are and to be able to provide more patient-centered care.”

After Turchin began noticing that many of his patients with high cholesterol, including those with diabetes, were opting not to take safe and beneficial medications like statins that can lower cholesterol and bring down the risk of heart attack and stroke, he developed a system to more closely study the phenomenon by analysing the text of provider notes.

The study focused on high-risk patients who either had coronary artery or vascular disease, diabetes, very high cholesterol, or had suffered a stroke. All were recommended statin medications by their physicians to reduce their risk of heart attack and stroke and reduce cholesterol levels. The retrospective study included more than 24 000 patients who were seen at Mass General Brigham between January 1, 2000, and December 31, 2018.

“Even in this higher-risk patient population, so many people did not accept statin therapy,” Turchin said. The study found that while about two-thirds of the patients who were being recommended statin therapy eventually tried it, about one-third never did. And it took three times as long for people in the study who initially said no to taking statin medications to reduce their LDL cholesterol levels to less than 100, compared to people who initially said yes.

The study’s biggest surprise, however, was the much higher rate of refusal by women than men. Turchin and his colleagues wonder if this might be due in part to a false misconception that heart disease impacts men more than women, and plan to further research the reasons underlying these results.

“Ultimately, we need to talk to our patients and find out in more detail why they would prefer not to take statins,” Turchin says. He is currently looking at the impacts of nonacceptance of statin therapy on outcomes that matter to most to patients including heart attacks, strokes, and death. “I think people underestimate how much of a difference modern medicine has made in extending people’s lives, and their quality of life, and medications can play a big role in that.”

Source: Brigham and Women’s Hospital

Difficult Conversations: How do You Tell Your Child They Have HIV?

HIV themed candle
Image by Sergey Mikheev on Unsplash

By Biénne Huisman

“It was very, very critical to me. It was an albatross around my neck. It was something that caused a deep persistent anxiety in me…”

This is how a 61-year-old retired school teacher from a township on the East Rand describes the feelings he had around disclosing to his son that he (the child) was born with HIV.

The man, who taught life orientation skills and history, agreed to be interviewed on condition that their identities are protected.

Speaking to Spotlight he says, “With my son, it became late in his life because I didn’t know how to do it – how to tell him. So I postponed and postponed. It was becoming increasingly difficult.”

Three months after the boy was born in 2001 at the Far East Rand Hospital in Springs, the child’s mother passed away from an HIV-related illness. At the time, hospital staff referred the widowed father and baby boy to HIV and AIDS treatment non-profit organisation Right to Care where Dr Leon Levin diagnosed the child with HIV.

“My wife died three months after giving birth. I didn’t realise then that she had HIV and that I have HIV. I took my son to Dr Levin, who tested him. I started giving my son ARVs. I had to employ someone to look after the child while I was working, and this woman didn’t truly understand about adherence and at times did not give him all his medicine. So she defaulted, which is very bad. It was a time when not much information was available, the time of the president [Thabo Mbeki] denying that HIV causes AIDS.”

Also in 2001, young orphan Nkosi Johnson died of AIDS in Johannesburg at the age of 12. Johnson made headlines the previous year when he told the International AIDS Conference in Durban “care for us and accept us. We are all human beings”.

‘Taking medication as a team’

As the years went by, the man says, the burden in his heart grew bigger. “We would go to Dr Levin every six months for a check-up,” he says. “I would tell my son that he is sick, but I did not explain why.”

Eventually, the man felt comfortable allowing Levin to assist in sharing the news with his son. “Around the age of 16, Dr Levin did a full disclosure with my son. It was the heaviest weight off my shoulders. After that intervention, we could speak properly. We had a heart-to-heart, and we started taking medication as a team. This made it easy for me to explain to the child the advantages of adhering [to ARV treatment], the meaning of defaulting [failing to take ARV treatment regularly, as prescribed], and all these consequences. I could discuss with my son the importance of adherence because when you default, the medication becomes resistant. I told him if you take your medication, you can live a long life. You can get married and you can have children.”

Despite the substantial progress South Africa has made in fighting HIV over the last decade and a half, HIV in children is still quite common. According to the latest estimates from Thembisa – the leading mathematical model of HIV in South Africa – around 238 000 children (under the age of 15) were living with HIV in the country in 2021. There were just over 8 300 cases of mother-to-child transmission of HIV last year. While still a staggering problem, this is a significant improvement from the early 2000s when the number was around 74 000.

Disclosure – how to get it right

Sharing news of being born with HIV to a child (perinatal infection) is perhaps an often overlooked, deeply tender aspect of the country’s broader HIV response. The National Department of Health recommends “partial disclosure” from three years old and “full disclosure” from around 10 years old – ideally before a child is 13 or before their sexual debut.

Levin, who is based in Johannesburg, and Dr Julia Turner, who is based in White River, Mpumalanga – both are with Right to Care – spoke to Spotlight about how they assist parents and children in this regard.

“Parents are so scared to tell their child that they have HIV, so they delay and delay and delay,” says Turner. “If you ask a parent they’ll say, oh no, let’s wait until they’re 15. And then they say, oh no, let’s wait until they’re 18. Because it’s such a difficult thing for them to do. They’re scared that their child will be devastated and become depressed and blame them. So they delay and delay and eventually the child either googles it themselves or reads their own file while they’re waiting for the doctor at the clinic. Teenagers and children are generally much smarter than anyone ever thinks they are.”

Levin and Turner point out that it is unreasonable to expect a child or teenager to regularly take medicine when they don’t know what it is for.

“At some stage, the children will ask why do I need this?” says Turner. “Or they’re refusing to take it and then the parents don’t know what to say, so they end up making up something. So they’ll say, you’ve got TB, or you’ve got asthma, or you’ve got herpes, or they make up any excuse as to why the child must take treatment. Perhaps ‘you must take the treatment, otherwise, you’ll die’, which is a bit scary. None of these answers are satisfactory, plus the child might be angry later if they learn they were lied to.”

Levin has been treating children and adolescents with HIV for 26 years. When he started, there were no guidelines and he had to learn from his own mistakes.

“Leon has been a paediatrician for many years and he was dealing with children and teenagers,” says Turner. “And he had to just figure out a way to tell them. And initially, it ended in tears. The child was crying, the parents were crying, he was crying, everyone… So, he slowly developed this technique of doing it so that it was brought into a positive light. And that really worked.”

Turner has helped to refine the technique. They explain that partial disclosure is explaining to a child that they have to take their treatment – without telling the child untruths but without bringing up HIV. Full disclosure is naming the child’s condition as “HIV”.

“Unfortunately, schools use HIV for their own purposes,” says Levin. “They’re using it basically to encourage children not to be promiscuous. So they’re giving out the message that only bad people get HIV and that people die from HIV. So while this works to encourage children to not be promiscuous, the problem is that as soon as a child hears the word ‘HIV’ or that they’ve got HIV, they immediately think they’re going to die – there’s that bad connotation.”

The story of the ‘soldier cells’

Right to Care recommends providing the young child with full information about HIV, without actually naming the disease, to avoid stigma and fear. The crux of the method is to not use the word “HIV” until myths around HIV are dispelled. The organisation offers illustrated booklets, depicting their narrative where white blood cells are depicted as soldiers.

“So we basically tell them a little story that in their body they have white blood cells,” Turner explains. “We say white blood cells are like soldiers and they go around your body and they protect you from germs. But you weren’t born with enough soldiers in your body. So that’s why you can get sick very easily. But the tablets or the medicine you take can help to keep your soldiers strong, keep your immune system strong, and fight off all the germs. So at least that’s true, and it’s a good reason why they must take their medicine. And they are usually very satisfied with that.”

As the child gets older, the story is expanded.

“As they get older, we can say, okay, well, why don’t you have enough soldiers in your blood?” she says. “And then we tell them it’s because you have a virus. You were born with a virus that kills off your soldier cells. And then as they get older, eventually when they’re about 10 years old, you can then say do you want to know the name of that virus that you have? And that’s when we turn partial disclosure into full disclosure by telling them the name HIV.”

Questions and answers

News of the parent having HIV is shared in a similar manner by framing the virus in a positive light. No blame is placed on the parent ever. Instead, when speaking to the child about their HIV status, the doctors recommend that if any blame is apportioned, that it be on the medical fraternity “for not having better medicine available” at the time of the child’s birth.

“We ask the child what they know about HIV, just to try and find out what negative things they have been told,” says Turner. “Then we tell them no, it’s not true, actually, people with HIV live long and healthy lives… I always ask them, what they want to be when they grow up. And if they say they want to be a pilot or a doctor or a teacher, I say, do you think people with HIV can be a pilot? And they always say no. And then I say, of course, they can. People with HIV can do anything they want to do. They can be doctors, teachers, anything.”

Right to Care is set to bring out a disclosure flip chart to help healthcare workers and primary caregivers with this conversation, which might be rolled out by the health department nationally.

“The thing is, you have to think on your feet because you’re having a conversation with this young child and it’s not so straightforward. But the flip chart tells you exactly what to say, it makes it much easier,” says Levin.

Meanwhile, the retired teacher and his now 22-year-old son are together establishing a small business in their community.

“My advice to parents,” he says. “Sharing their HIV status with children might feel like a bombshell. They must ask for professional help – doctors have techniques to make it easier.”

*For more information visit: https://www.righttocare.org/

Republished from Spotlight under a Creative Commons 4.0 Licence.

Source: Spotlight