Visually impaired examiners screen women for breast cancer

The Story

Germany has provided high quality early stage cancer screening to tens of thousands of women by training visually impaired women to perform breast examinations.

Discovering hands, a social enterprise working with the German Ministry of Health, puts the exceptional sensory abilities of blind people to use in early disease detection. It’s trained 45 visually impaired women as Medical Tactile Examiners (MTEs) who can perform specialised examinations to detect alterations in breast tissue, and are then employed by public hospitals or doctors to provide high quality breast examinations.

The project was conceived in 2006 by gynaecologist Frank Hoffman, who hopes the enterprise will turn a perceived disability into a huge advantage, both to society and in the employment market. The idea emerged from his frustration over the limited amount of time doctors had to properly examine the breasts of patients – in Germany, most only have one to three minutes for a screening.

Stefan Wilhelm, who is currently  rolling out discovering hands to an international market from Cali, Colombia, says there was a clear need for treatments that would fill the gap. “Gynaecologists didn’t have time to do it right. They didn’t get the pay to take the time they need,” he explains. It meant cancers could potentially go undetected, putting lives at risk.

Examinations offered by the newly trained practitioners, on the other hand, typically last between 30-60 minutes. They’re more relaxed experiences for patients as well as being more thorough, and practitioners are trained in communication skills, patient psychology and administration as well as the methodologies for cancer detection, over a 9 month period by certified trainers.

And they are far more effective than typical procedures in detecting breast cancer at an early stage. While a peer-reviewed study of the outcomes of the project is to be published by the end of June, a preliminary study from 2008 suggests that medical tactile examiners detect 28% more tissue alterations that are 50% smaller than doctors usually find. Gynaecologists might find lumps between 1 and 2 centimetres and women who examine their own breasts when they are 3.5 centimetres, but trained MTEs will often find lumps of between 6 and 8 millimetres, giving doctors a potentially life-saving head start in treating the disease.

In Germany trained practitioners now perform 30,000 examinations per year, working in 35 gynaecologist practices and hospitals across Germany as well as the discovering hands centre in Berlin. The enterprise hopes to recruit 20 more examiners by 2017, with the capacity to carry out nearly 40,000 examinations each year.

Wilhelm explains that Public Private collaboration was fundamental to the success of the project. When Hoffman approached government authorities in Germany with his idea, they referred him to a vocational centre for visually impaired adults, a partly government-funded NGO that developed a course for training MTEs. Now, the treatments provided by the MTEs are paid for by health insurance companies under government health provision. “The project would have been impossible without the Public Private Partnership, without public funding,” Wilhelm says. “Frank had the idea. But he had no idea about vocational training for blind adults. A local agency for social affairs financed the first course and then the Ministry for Labour and Social Affairs supported training trainers, and that helped make it a reality.” Specifically, Katrin Zirke, a teacher for blind adults with over four decades of experience, helped Frank develop the curriculum for the course.

To expand the project outside Germany, the team behind discovering hands is experimenting with new ways of sustaining a business. “The idea really is to implement social franchise companies in these countries, to keep administrative overhead at a minimum while maximising impact,” Wilhelm says.

Roll out of the project is currently underway in both India and Columbia, with a pilot in the city of Cali being run in cooperation with CAF – Development Bank of Latin America, and a number of local stakeholders. There are five MTEs in Austria and Columbia and one in Mexico. A pilot project in Xalapa, Veracruz (Mexico) will start in July along with the nationwide roll out in Colombia. For 2018, a pilot project is planned on the Iberian peninsula and in 2019 a further expansion will be implemented in Latin America along with 3-5 further countries in Europe.

Outside Germany, too, is where the impact of the MTEs could be greatest. Other early stage detection methods, such as mammograms, are not so readily available and in Latin America breast cancer is the first cause of death among women, killing 60% of those who develop it.

The impact on social integration is also more profound. Whereas social security and job training is widely available for visually impaired women in Germany, the opportunities for their counterparts in Columbia and Mexico are less rich. “Every morning we started the class at seven, and the trainees were there at 6.45,” Wilhelm says. “This is the opportunity for them. This is when they can say, I can help someone – I’m not the person that needs help.”

The process of early stage detection is not without its critics. Some medical practitioners argue that finding small lumps can simply increase the number of false alarms and unnecessary biopsies, both wasting resources and cultivating fear among women. It’s a charge Wilhelm recognises, but he argues that the training given to MTEs means the experience of an examination is more reassuring than alarming, and that the additional level of screening, which is more tactile and less clinical, serves as a first warning because the MTEs never diagnose. The decision about further diagnostic steps is always in the hands of the responsible physician.

“It’s an intimate and educational space,” he says, adding that the experience of meeting and learning from visually impaired women is a new and revealing experience for many patients, not only regarding breast cancer risk factors and preventive care, but also in terms of disability and social inclusion. “This motivates women to go back and to take part in more early detection.”

(Photo Credit: discovering hands)