Mallow Patient Pathway ~ Online Patient Journey Guide

The Covid-period significantly strengthened the status of digital healthcare too. As a responsible patient organization, we adapted to the new situation. Since we could not meet the patient, we delivered the help to their home. So that the patient and her family can read authentic content in the e-world, so she can find all the helping elements in one place, she will always know the direction, so she won’t get confused from the surge - or the lack - of information – we lead her online. We support her not only with descriptions, but also with brochures, videos, explanations of treatments, useful links - all these in one place, from station to station. After a gynaecological tumor a woman can recover or lose the opportunity to have children and thus have a family. It also might happen that the family, the husband, the children lose her. We keep contact with the patients, the families. According to the experiences of the last 9 years we concluded that a digital e-escort (e-healthcare) that can help everyone (women, family, profession) is needed. As a patient, after the existence of options the second most important thing is to find the options, because these can help us stay alive, can help us live a life with better quality, or in case of cervical cancer with the so-called ART surgery we do not lose the chance to have children. We think every woman is a Mallow Flower. Persistent, strong and very beautiful. But sometimes our petals are damaged. That is why we have to look after ourselves and each other. Every year about 5-6,000 women are diagnosed with gynaecological cancer in Hungary. The digital patient journey helps them, but also helps patients already on the pathway, those who relapsed and their families also benefit from it. It involves and helps the profession, gynaecologists, gynaecologic oncologists, radiotherapist, pathologists, nurses, physiotherapists, rehabilitation experts. There are involved families and supporting professionals in the community on a social level. The more involved people there are, and the more families and helpers are reached, the more time can be gained and the more effective help can be given. On the professional side, it provides new treatments or rehabilitation types a constantly growing platform to be published. The first milestone of this digital patient pathway guide was the launch of  our unique website in August 2021. The second big step would be the development of a phone application and its availability to patients. With our “tender”, by promoting our existing digital patient pathway website, and with the application to be developed (as a basis of the tender) we would like to reach as wide a range of Hungarian people as possible, to inform and support them. Of course, with this development we would also like to adapt to WHO 90-70-90 aims in Hungary, with special focus on treatment, namely 90% of women with cervical cancer should receive proper care and treatment (in pre-cancerous and invasive cancer cases too).

A patient manages her pathway herself or with the help of her relative, or a well-organized patient group - if there is any. If a woman diagnosed with cancer goes online to get more information, she might read a lot of things, some of them will not be authentic. In addition, the flow of information can be confusing. The basic idea was to provide comprehensible information about gynaecological cancers on an authentic platform. Creatingwww.malyvabetegut.hu started in autumn 2020. We consulted professionals about content, appearance and implementation. We outlined the patient journey, then one fellow patient drew it, so we drew the patient pathway with the help of professionals, its stations and we filled them with content. The site became active after correction and testing in August 2021 and is available now for Hungarian people, for those who get gynaecological cancer diagnosis so that we help and escort them in their patient pathway. On one side of the screen the descriptions of the station can be read, on the other side there is a map where we can follow where we are at the moment. Now the contents of each station is available in audio version.

The online digital patient pathway with all its functions can be used on PC, and a simple version is available on phone. As we always have our phones with us, the application to be developed and supplementary services (audio materials, calendar etc.) would help us deliver help for even more people. Our plan is to develop a phone application with more functions, for example calendar notice if it’s time for follow-up, an appointment, or blood test, etc. With imaging smarty, if the patient has an imaging scan, there would be a description of the test and about how to prepare. In our case ’innovation in implementation’ rather means the more useful we make the patient journey, the more women and families we can reach. Our aim is to educate, support and inform! 

Mallow Flower Foundation is the only non-profit civil organization in Hungary that helps those who have to face with gynaecological cancer diseases. The patient pathway is a bumpy road of physical and mental burden with often life-changing decisions and this cannot be done alone. Beside the family, the doctors, healthcare experts, the fellow patients can also give a lot of support to each other as they have walked the path before us. It is hard to see through the patient journey and it is very important to always focus on the next station. At a given point we should collect the relevant information only so that the patient, the family do not have to cope with everything at one time. Of course, we have to see the next step too. We created the patient journey to escort the patient on the road and give her proper information. So we can give the most help. Opportunities lead to recovery and with the Mallow Flower we help  the lives of women, mothers, future mothers, families. 

The president of Mallow Flower Foundation, Icó Tóth, mother and wife had cervical cancer in 2011 after her second child was born. She couldn’t find any community or organization to turn to for support. After her experiences she wrote the book ’All Moms recover’. Nowadays this book is highly recommended by gynaecologists when cervical cancer is diagnosed. Icó’s dream has come true as she had set up a foundation with other passionated persons, that helps make the quality of life better for women struggling with the disease and also raises the awareness about cervical cancer in order to make prevention primary. In other, the Mallow Flower Foundation has been established in 2013 to give prevention more prominence and to help the psychological and physical recovery of women struggling with cervical cancer. The aim was to set up an organization in Hungary that pays attention to prevention and works for a special rehabilitation. There hasn’t been any organization with this function before, although it would have been so much required.   

In the past few years, Mallow Flower Foundation extended its work for gynaecological cancers – cervical cancer, ovarian cancer, endometrial cancer, vulva and vagina cancer, and has become a connection between patients, healthcare professionals such as doctors and health visitors, authorities, media, Government and population.  We are working with several events, initiatives on making healthy women become more conscious about prevention, and the symptoms of gynaecological diseases. We are proud to organize the European Cervical Cancer Prevention Week and its series of events  in Hungary every year since 2014. We work for HPV prevention, with organizing prevention campaigns for adults and adolescents. The reason why we think we are the right team is that with her personal experiences Icó taught us how important it is to be a part of a supporting community while facing the disease and also how crucial it is to have the right amount of information at the right time.

We are constantly developing year by year our Recovery Helping Program, that gives physical and mental help and improves the quality of life. To make help available anywhere  – that’s why we have 19 Mallow Flower Points across the whole country beside our virtual community. So in our helping activities, we are in daily contact with patients. We have a secret and closed group, the Community of Mallowflowers on Facebook, where more than 1,000 women talk and help each other with experiences in all areas of their illness, and besides this we are also in contact with patients who are currently in the hospital. Because of the continued support of the community, patients as well as President Icó’s “involvement”, we see and feel where the blockages in the patient’s pathway are, and what exactly the patients need. We are in almost daily contact with those who turn to us, we also take international practice into account in our work and we always react when we find that this or that is needed. So because of this day-to-day contact and day-to-day support, we, our team, the Mallow Flower Team are called to the right people to design and deliver this solution to the target population.

Finally some interesting results of www.malyvabetegut.hu;  the  website has been promoted on Mallow Flower’s online forums since 03/08/2021 (Facebook has reached 62,836 people and 7483 are active, since the 03/08 ’go live’ 3000 people visited the website and spent minimum 3 minutes there). Information cards have been created about the Mallow Patient Pathway and have been sent to Oncology Centers, Supporting Clinics and professionals. The Mallow Patient Pathway – Digital patient pathway escort is a unique online supporting system. Looking around in the world we have not found such a development, and ESGO ENGAGe takes over the development, translates it into more languages and will make it available for gynaecological cancer patients. In 2021 the website won the health care category in the Website of the Year tender in Hungary.

Referring to the above, the patient pathway website is ready, and this will give content to the application that we would like to develop with the help of the tender – and add the mentioned supplementary extra functions to make it handy. HAVE HELP ALWAYS AT HAND!

The Mallow Patient Pathway – Digital patient pathway escort is a unique online supporting system. Looking around in the world we have not found such a development, and ESGO ENGAGe takes over the development, translates it into more languages and will make it available for gynaecological cancer patients. In 2021 the website won the health care category in the Website of the Year tender in Hungary.

Next year our basic project is the professional creation of a website that we want to create in several languages of the world. Start whit Europe first, potential to scale globally late through realantionsips whit NGOs, associations etc. Oir proposal is to translate into English first,tehn the addictional four language (Spanis, Franch, Italian, German) and then in to other European language (whit ENGAGe scope).

For the next 5 years, we also want to implement this project in the head and neck area, where we are professionally developing thyroid cancer, oral cervical cancer, oral cervical cancer, cervical and nasal mucosal cancer, and laryngeal cancer.

In addition, a telephone application in Hungarian is being developed, first in the field of pediatric tumors and then in the field of head and neck tumors, to make it even easier to be there with patients as information and a helping hand. One of the graduating students of the Faculty of Informatics of the University of Veszprém helps us to develop this application.

All members of our team are open and supportive of diversity, fairness and inclusion. We value and support each of our team members, both internally and externally, according to their own knowledge, human orientation and perspectives.

As a non-governmental patient organization, financing comes from funding, mainly from companies. Development of the digital patient journey escort was also financed by companies. The online digital patient pathway is free of charge for every user,  that helps make the quality of life better for women struggling with the disease, and help their families also with valid and up-to-date information. And also referring to the above, this website helps the work of healthcare professionals. They can save time by meeting with previously informed and educated patients who use the website / application previously. This is the main benefit and the main value - which is a “win-win” model for every part: patients, healthcare professionals, and our patient advocacy group (Mallow Flower Foundation).   

Basically, the Mallow Flower Foundation has no fixed annual income. We maintain the foundation from individual donations, tax offers, tender contributions, etc., as well as from the support of sponsors (companies) related to each campaign and project. The Online Patient Pathway Guide developing process based on mainly voluntary contributions. It means that the professional contributing partner of the development and sustainability of the Patient Pathway Guide is the Hungarian Gynecologist Oncologist Association, and the professional publisher’s reader of the entire patient journey was  – president dr. Zoltán Novák. So professional sustainability is sured, and we have another professional offering from Pannon University, Faculty of Engineering Informatics to develop the phone application. Besides this fact, we show this unique digital helping many firms, who are sure of the ongoing financial support. (eg. AstraZeneca, Roche, GSK, Cofidis). In recent years, financial stability has been the result of our always relevant, unique and creative projects, our persistent and sacrificial work, which, fortunately, has always been supported so far.

As we mentioned before we present this project regularly on many platforms, and look for the possibility of connection. We always monitor the professional up-to-dateness of the content, and always examine ease of use  (extra functionality, handy applications etc.). 
In addition to our Foundation’s occasional grants, we also used this project to find and search for several large companies, whose appearance on the site or related to the project is considered as advertising value, be it for example the inclusion of a logo, being in a film. All this makes it possible for new areas of illness to create an online patient guide. This continuous development ensures its market value and opportunity of sustained donations and grants, selling products or services, service contracts to governments, raising investment capital, or a combination of all.

We produce several helping brochure each year related to gynaecological diseases. These publications also have regular sponsors who have a professional and / or interest in reaching patients through the Mallow Flower Foundation. This is also the case with our latest publication, entitled ‘Outside-Inside’ Imaging Oncology Procedures.

It is a multi sponsored project, supported by Astra Zeneca, Roche and two other non-pharmaceutical companies. And finally: Results of the project: - Authentically and professionally served patients by information worded clearly, in their own language. - To ensure a positive outcome, ensure the opportunity of personal treatment. - As a result of appropriate information fear and anxiety of patients decrease during their pathway, that makes the chance of recovery better. 

Conclusion:
- We created this digital patient pathway guide to escort the patients and their caregivers on their patient journey.
- Provide as much help as possible.