Amandine and France, nurses at the heart of the HéMaVie™ solution

Launched in January 2018, HéMaVie™ is a support program for patients with multiple myeloma, as well as their caregivers. HéMaVie™ aims to contribute to the improvement of the care pathway and the patient experience. Developed by the AF3M* in collaboration with the AFSOS** and the Compagnie des Aidants and with the financial support of the Bristol Myers Squibb Laboratory, HéMaVie™ is implemented by Observia. HéMaVie™ is one of the emblematic projects in which Observia is involved.

This global solution offers several digital functionalities, such as a directory of local resources, a personalized toolbox for monitoring health status, information on the disease and the care pathway, etc. It also offers human and personalized support: two nurses who are entirely dedicated to the program.

As an indispensable patient and caregiver support team, who also provide liaison with the care team, Amandine and France are the human pillars of the HéMaVie™ program. In this interview, they describe their daily lives with patients and caregivers, their challenges, and their successes.

*French Association of Multiple Myeloma Patients
** French Association of Oncologic Support Care

1 - HéMaVie™ is, among other things, a human and personalized accompaniment that you both oversee: how does this translate into daily life for the patient?

France: First, we call the patient following their doctor’s registration or the patient's self-registration. This is a welcome call. We introduce ourselves and the program, and we get to know the patient by reviewing their history and current state of health, as they relate these matters to us. In other words, they tell us their story.

"We take what the patients give us, we adapt to what they tell us, and we go with them to where they need to go."

Depending on the stage of their disease, their patient journey, and individual patient factors, the care offered will differ from one patient to another. The type of care we offer also depends on the patient's feelings: someone who is very worried, who cannot communicate with their family, or who hasn't understood everything pertaining to their situation requires a different type of care from someone who has a strong support service in place and fully understands their health situation. That's why the follow-up is really personalized.

Amandine: On a daily basis, we are a listening ear, a support for the patients. They can call us as we can call them, it's an exchange between them and us, there is a real availability. When we introduce ourselves, we set up a framework for discussion and this is generally very well received and respected.

2 - Patients may already be very busy with their treatments, their medical appointments, their personal life... How do you help them to simply integrate HéMaVie into their daily life?

France: Here again, integration into the patient's life depends on their needs. The person who goes to the hospital twice a week will not have the same needs as the person who is in the maintenance phase of their treatment and only goes to consultation once a month. I often end my calls by saying to the patient, "When would you like me to call you back?" and sometimes I'm surprised because their answer doesn’t match what I expected, if they ask to be recontacted earlier, it means they need it, and that we are a real resource to help them. We really adapt to their needs.

"Integration into the patient's life depends on their needs: the person who goes to the hospital twice a week does not have the same need as the person who goes once a month”

Amandine: There is no typical concrete case in myeloma treatment. It's very personalized, we have people who go to the hospital every day and who still need to call us, who ask for help. In Toulouse, where I am often solicited as soon as the diagnosis is announced, I call the patients a lot at the beginning, because there is such an amount of announcements, more or less hard on the patient, examinations, beginning of treatment, they have a great need to debrief, and then they feel less of this need.

3 - The Covid 19 pandemic has upset the management and follow-up of chronic patients. Looking back over the last two years, what do you think are the key success factors for remote patient support between two follow-up consultations?

France: When the Covid crisis started, I had some patients that I didn't necessarily call regularly anymore. Because of the lockdown, I called each patient back to check in. I zoomed in on the isolated patients, especially those who live alone. I called some of them several times a week. Some didn't leave their homes for weeks, without seeing their relatives! They were really anxious.
We also made a lot of connections with the care teams, because hematologic consultations were replaced by telephone consultations, and sometimes the patients forgot to ask certain questions. We would take care of pointing this out to the caregiver, who then contacted the patient quickly, so as to avoid any further anxiety.
It was a matter of listening, advising, reassuring, trying to give them the keys to understanding mask-wearing, handwashing... Some were very worried, because they are fragile patients, at risk.
Our challenge was really to listen, to support, to break the isolation and to make the link with the health care teams.
I really felt that the HeMaVie TM program took its place in the healthcare system’s organization in this period of crisis.

"Three key factors in the success of our remote support: support, breaking the isolation and making the link with the health care teams”

Amandine: We were also there to support patients in their decisions, to answer their questions: can I go out? can I see this person? All the questions about vaccination...

France: We also received a lot more incoming calls at that time, because patients couldn't find answers to their questions about their particular situation.

Amandine: Yes, the sanitary situation added a layer of vulnerability and fragility for multiple myeloma patients with all its associated uncertainties.

4 - Patients with multiple myeloma may be asked by their health care team to join the program. How do you interact with these teams? And how do you convince them to offer this service to their patients?

Amandine: The hematology centers we work with have signed up for this partnership in advance. We begin each collaboration with a day of immersion in the hospital during which we present ourselves in depth. This contact is fundamental.
Then we have to maintain these contacts. Often, we identify one or two resource persons, referents at the hospital, with whom we will interact in particular: a doctor, a nurse, a pharmacist... who will be more of a driving force and bearer of the project on site. We also interact a lot by e-mail or telephone, depending on their preferred means of communication.

"We personalize our relationship with patients, but also with caregivers!"
We personalize our relationship with the caregivers: some teams have more or less resources and time, some want us to give them updates every month, some don't want to be called but contacted by email... we also adapt to their requests. We regularly remind them, because we are extra-hospital, and the fact that we make reminders, it allows us to maintain this relationship.

France: It's true that this issue of maintaining contact is essential. Even if the centers joined the project at the beginning four years ago, we pay close attention to maintaining this link with the teams on the long run. So we invent solutions! The objective is to be integrated into their team while being external. We are in charge of the patient's life course, but we work in coordination with the hospital teams on the care course.

5 - What is the most beautiful thing that a patient or a caregiver has said to you in the context of your mission to accompany HéMaVie?

France: I have a very vivid memory, which touched me a lot... It was at the end of the week, the last patient I called during the day, who told me "Thank you for existing". This lady also told me "You call me every time I need it". I also heard, "I don't know how I would have done it if HeMaVie wasn't there to help me”. This is very powerful! We realize that HeMaVie is a real resource for them, a huge support.

Amandine: More than one sentence, it's the whole job! In fact, what is great is that we are lucky enough to do a job where we don't spend a day without being told "thank you". Every day patients thank us. I think there are few jobs where you can experience that!

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