Published on March 13, 2014
Health Smartees Webinar This is the slidedeck of our Health Smartees Webinar, presented by Saartje Van den Branden on Wednesday 12 March. The presentation elaborates on a Roche Customer Consulting Board case study.
HEALTH SMARTEES WEBINAR SERIES Part 3: a Roche NL case study
1. Give women with breast cancer a face, both internally (within Roche) as well as externally. 2. Map and understand the psychosocial and informational needs of women with breast cancer in the Netherlands. RESEARCH OBJECTIVES 3. Evaluate the Breast Friends concept and other breast cancer initiatives.
1. Patient care 2. Moderation 3. AE screening & reporting Three major challenges
We paid special attention to the emotional response when talking about the disease. Depressive feelings of participants that could lead to dangerous situations and/or disrupt the community resulted in direct actions, following an action plan that was designed upfront. 1. Patient care 1. Direct moderation by replying on the community and show empathy / understanding. 2. Contact the participant via private message and engage in interaction to determine whether more follow-up is needed. 3. If necessary, refer the participant to a specialized organisation and/or Roche (in case of product/brand issues).
“I did not think it was hard, you could remain as anonymous as you liked (not telling your name, not sharing photos or any revealing photos). And talking about it with the moderator was also not difficult, I felt protected by her professional secrecy.” “Personally, I had no problems with it. In the end, you only share what you want to share. I did try to keep it all about me” To protect the privacy of the participants a set of additional measures was taken both for participants as well as for Roche. Roche did not have access to the community. InSites Consulting acted as a proxy & filtered the information for Roche through different channels (e-mail updates, quotes, progression updates). In all communication to Roche usernames and verbatims were anonymized. In reporting, we only use photos that do not portray the participants. All contributions were carefully screened daily, as some participants tended to share very sensitive and personal information with the moderator that should not be seen by other participants. 1. Patient care - Privacy
Moderating a health community is different from most communities we conduct at InSites Consulting. Participants are not just consumers, they are patients. 2. Moderation – how? Tone of voice: more serious, less playful, but do not patronize Be inquisitive, but keep privacy and sensitivity of your questions in mind Keep a certain distance from the participants: they are patients, the moderator is not. Be respectful and sensitive, but do not try to be one of them. Gamification cannot be used as in any consumer research as it does not match the seriousness of the medical issues discussed, the purpose of the community, nor the expectations of the participants.
We looked for a moderator meeting the following requirements: Female About the same age as the participants Knowledgeable about breast cancer (in this case, the moderator personally knew breast cancer patients) A suitable moderator was found via the InSites Consulting global moderator network. 2. Moderation – who?
Before the community All relevant members of the project team were certified for detecting & reporting adverse events (AEs). Collected the following information from Roche (Up-to-date) list of brand names (+ molecules) for which adverse event reporting was required Contact details of local drug safety instances Mastered the necessary forms (which needs to be completed in case of an adverse event). During the community Every day, once a day, scanned all participant posts/input for AEs. Every day, the output of the community was exported to Roche to be checked as well After the community Quality checks and completion of final reconciliation form. 3. Adverse Event screening & reporting
+ lounge Online • Natural environment • Longitudinal • Online engagement Community approach Blog Discussion
"Is it true that I can not enter the blog anymore? I would like to make a copy of it for myself, so that I have a kind of diary for myself” "I found the blog tasks very nice to do. Although I already keep a diary, it was nice to write it down again. It is a good way for me to process everything.” “This (to write everything down and think about it) is good for me, so thank you for letting me do it” Why a blog? Participants really appreciate the blog phase of a health community; it is the place where they can write up their personal story while having a one-on- one trust-relationship with the moderator.
The community in numbers 32 active participants 5 personal blog tasks 452 personal blog messages by participants 36 discussions 737 replies to the discussion 55 photos 6 adverse events reported 1189 messages in total
The story of the community Three themes on the community: 1. Your breast cancer story - blog 2. Getting & finding information - discussion 3. Feedback on existing initiatives around breast cancer in the Netherlands (Breast Friends, IPSO, Pink Ribbon, BVN) - discussion 5 most popular conversation starters 1. An image says more than a thousand words… 2. Your circle of trust 3. Finding information 4. Breast cancer in Dutch society 5. A helping hand
Breast cancer diagnosis is the start of an emotional rollercoaster First reaction varies from shock (“the world is ending”) to denial (“this is not possible”) to picking up yourself again and go on (“be strong, you can beat this”). “The next day, January 18, on my son's birthday I was diagnosed with breast cancer. At that moment I felt that the floor beneath me fell away. My husband and I looked at each other and were totally surprised. How is this possible… me breast cancer?” “The diagnosis of breast cancer felt as if a train ran over me. I was paralyzed, it was fortunate that my friend was there with me because I heard little during the remainder of the talk.” "At that moment I really felt bad. I thought, 'why ME'? I was not angry, I thought I WILL WIN THIS"
In the first phase of the treatment women with breast cancer get a lot of attention from their surroundings (family, friends,…). Not everyone can deal with it and friends are often lost. The treatment path is typically described as a ‘rollercoaster’, a unstoppable train or assembly line. Treatment after treatment ensues and patients have little to no time for introspection or contact with the outside world. “I experienced that many acquaintances did their best and sent me messages… but I also lost friends who couldn’t deal with it…” Treatment: start traversing a long path with a lot of attention from surroundings.
Who of the following persons is NOT part of the ‘Circle of Trust’* of women with breast cancer? A. Colleague B. Doctor / nurse * Circle of Trust: person in the surroundings of the patient who can give support, can be trusted and talked to.
Who of the following persons is NOT part of the ‘Circle of Trust’* of women with breast cancer? * Circle of Trust: person in the surroundings of the patient who can give support, can be trusted and talked to. A. Colleague B. Doctor / nurse
‘Circle of trust’ is of vital importance and ideally consists of relatives, peers, and medical experts. Nurses, specialists (hospital doctors), or general practitioners were mentioned by no one as being part of the circle of trust. "The perfect circle of trust would also include a practitioner who connects with you. It did not happen with me. Often I still not know where I should go with various symptoms and I get someone on the phone who does not know who I am. That bothers me. The anonymous thing of this whole difficult process." Psycho- Social help & information (expert) Practical help (Circle of Trust) Peer contact & information (fellow suff.)
Nurses and doctors are knowledgeable, but have insufficient interest and lack the emotional touch HCP’s have little to no attention for the personal, emotional side of the patient (psychosocial). Patients consult many different HCP’s, making it difficult to build up a personal relationship. There is hardly ever any after care, while patients want a final interview and follow-up. “With the oncologist I had a difficult relationship. When the possible side effects are presented very dryly, it does not make you happy to say the least. He was clear, but he could have been more empathic“ “As a patient you need one or two persons you can always fall back on. I wanted to be treated as a “human” every time and not as a number.”
After the treatment: which activity really helps to pick up normal life again? A. Sports B. Talk with a psychologist / psychotherapist
A. Sports B. Talk with a psychologist / psychotherapist After the treatment: which activity really helps to pick up normal life again?
Sports are essential to promote physical and mental wellbeing. “Definitely go to the gym for women with breast cancer, it is so important for you psychologically as well as for your condition as you just have to go out every day. Meet other people and get some fresh air, otherwise you become isolated and no longer dare to go out on the streets (it is very important you talk about it!)” “Five months after my operation I started with a revalidation program in the hospital. That was nice and good for my health. Because of the medication I gained 8 kilo’s and exercising really helped. I also met some nice people and we still have contact.”
After the treatment: a ‘black hole’. Need for support & psychosocial aid. “I do notice that the interest of most people in the course of time considerably decreases. There is no one to blame, but I do / did suffer from it. In the third week loneliness strikes. I feel isolated and sometimes abandoned. There are very few people who contact me. I get that, but I still suffer from it ... I just need some contact!” When the patient finally comes of the treatment rollercoaster, there is suddenly time for introspection. With little support from their surroundings this period is often described as ‘falling into a deep black hole’. There is also the sudden realization of the fact that breast cancer may never really disappear, might lead to a shorter life, and will be something to be confronted with on a daily basis because of the hormone therapy and changes to the body. In this stage patients often start to feel very lonely as they feel abandoned by the hospital, while their Circle of Trust diminishes – relatives think and expect that the breast cancer is over and normal life can resume.
What do patients generally think about organizations for breast cancer? A. ‘There is not enough’ B. ‘There is too much’
A. ‘There is not enough’ B. ‘There is too much’ What do patients generally think about organizations for breast cancer?
‘I cannot see the wood for the trees anymore’ There are now so many websites with information and organizations for breast cancer that patients have difficulties having an overview of what is what. The various agencies and websites should cooperate more & bundle their forces and knowledge. “Bring together bigger and smaller breast cancer organizations and optimize instead of re-inventing the wheel.”
Contact with peers is invaluable "The information I was looking for was about the treatments, side effects and especially stories of fellow sufferers." "I did not look up a lot of information but rather asked my peers in our gym hour." "When it comes to emotions, people who do not have experience with breast cancer are helpless compared with experienced experts.”
www.insites-consulting.com Saartje Van den Branden Saartje.VandenBranden@insites-consulting.com +32 9 269 15 11 Martijn Huisman Martijn.firstname.lastname@example.org +31 10 742 10 34
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