Technology
Technology, films and lymphedema
New ways of disseminating standardized information By Melanie Thomas
W
hy might we need technology in lymphedema? Accessing lymphedema services and specialists can be a long journey, and unfortunately, services are busy, and the demand usually exceeds availability, making for long waits for assessment and treatment1. Many people will search “Dr. Google,” but often cannot access the advice that they need and what they are able to find can be overwhelming. In Wales, although we do have services across our country serving a population of 3.2 million, there are still not enough resources to go around. Thus, as the referrals for lymphedema assessment and treatment rose, Lymphoedema Network Wales needed to review the available options in supporting patients. One such option was improving the technology surrounding lymphedema. Technology is everywhere and unsurprisingly around 80% of the population now have a smart phone or similar device. There are around 2.5 billion smart phone users in the world and of those, many use their mobile device for accessing the Internet and downloading health apps2. It is important to recognize that there are no perfect lymphedema apps. Many are for breast cancer related lymphedema patients,
and, as such, are not suitable for all patients. There are also a limited number of evidencebased films in comparison to films endorsing lymphedema products. Within Wales, we provide standardized information leaflets for all our patients but are often still asked whether there is an electronic version, or if they can be downloaded as a film. Additionally, when language or literacy is an issue, a medical leaflet or the Internet can cause confusion3. Now, if you have ever met me or heard me present, you will know that I am extremely passionate about lymphedema and can be very persuasive. Many of my patients tell me “Aw Mel, I feel so motivated when I am with you, but then I forget about things when I go home. I wish I could take you home with me!” Therefore, when an opportune meeting with a media producer occurred, I realised that instead of the uninspiring paper leaflets, we could create stories that would come to life on screen (and patients could take me home with them). Fortuitously, the Welsh Government had just advertised for applications for Health Technology and Innovation Projects. Our grant submission focused on why evidence based technology could enable people with lymphedema to feel more in control of their
Melanie Thomas is the National Clinical Lead for Lymphoedema in Wales, UK and runs Lymphoedema Network Wales. A physiotherapist by background she has been instrumental in ensuring all patients with lymphedema in Wales have access to standardized lymphedema services. Mel has just completed her doctorate exploring the impact of the lymphedema risk reducing recommendations with breast cancer patients.
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condition. With a sprinkling of luck, we acquired £84,000 to develop 18 videos. Working with a company called PocketMedic (the trading name for eHealth Digital Media Ltd.) not only allowed the production of these video films but also created a digital platform where all the films are stored. PocketMedic became the vehicle by which lymphedema clinicians can deliver personal film-based prescriptions to engage patients in their own health outcomes and promote positive behavioural change.
PocketMedic became the vehicle by which lymphedema clinicians can deliver personal film-based prescriptions to engage patients. All lymphedema clinicians can provide the film links to their patients. The link can be typed into an Internet browser on a mobile phone, computer or tablet, enabling the patients to watch as many films as they need. Furthermore, the films can be shared with family and friends so that they too can understand what lymphedema is all about. Filming began in 2016 and the stars are people living with lymphedema. In each film, patients shared their stories along with healthcare professionals4. Each film lasts on average five minutes with the longest being 12 minutes. All the content was scrutinized by the seven national lymphoedema services in Wales, ensuring evidenced based information was being shared. Ly m p h e d e m a p a t h w a y s . c a 5
Available Films n
What is Lymphoedema?
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Holidays and Lymphoedema
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Skin Care
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Exercise class - Lower Limb
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The Joy of Exercise
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Exercise class Upper limb
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Compression Garments
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Lymph Assist/Pump Therapy
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Lower Limb Simple Lymph Drainage
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Reducing the Risk of Lymphoedema
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Upper Limb Simple Lymph Drainage
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MLD in Action (Manual Lymphatic Drainage)
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Healthy Eating
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LVA (Lymphatic Venous Anastomosis)
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Lipoedema
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A Child’s View of Lymphoedema
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An Adventure Day for Teenagers with Lymphoedema
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Families with Lymphoedema
80% 70%
Lymphoedema Network Wales also felt it was important that there were simplistic ways to describe how lymphedema and cellulitis occur, so PocketMedic used graphics to make it easy for all patients to understand. Additionally, as Lymphoedema Network Wales had just commissioned a National Lymphoedema Paediatric Service, the team wanted films suitable for children. PocketMedic very cleverly created cartoon characters with children’s voices to create an informative film. As with all new initiatives, data collection and evaluation is extremely important to determine any benefits. PocketMedic created an easy way to capture feedback from people who watched the films. After each film, the following data (see chart) is captured and sent back to Lymphoedema Network Wales on a monthly basis. Initial feedback suggests that some viewers’ knowledge of lymphedema is increased after watching the films. Most viewers indicated ‘same as usual’. Since the films launched in 2017, over
More/Better than Same as usual
Feedback
Worse than usual
60% 50% 40% 30% 20% 10% 0% My swelling is
My knowledge of swelling is
6 Ly m p h e d e m a p a t h w a y s . c a
My skin condition is
Managing my weight is
My movement and function is
5,500 people have viewed the films, and 56% of those have watched them more than once. Lymphedema clinicians now feel confident that the information provided to their patients is not only evidenced based, but is in a format that is easily accessible and can motivate people to take care of their own health. Other benefits of the production of these films have supported an on-line, E-Learning education tool for all healthcare professionals. The information provided is basic, but
highlights the impact of having lymphedema or chronic oedema and the four cornerstones of lymphedema management. This E-Learning module is only available in Wales, but we are actively working with our partners to make this accessible for everyone everywhere! For those keen to see the quality of the films, the compilation film can be accessed at www.medic.video/lymph. These videos are an example of using technology and evidenced based information on lymphedema to empower and inform patients. The E-Learning module also demonstrates that technology in the field of lymphedema can improve knowledge and understanding of the condition for healthcare professionals. If you require any further information, please contact us at Lymphoedema. Network.Wales@ wales.nhs.uk. LP A full set of references can be found at www.lymphedemapathways.ca Wi n t e r 2 0 1 8 / 1 9