Looking for feedback on cancer coaching service design
Hello to the community and thank you for taking the time to read this,
We are in the process of designing a new service to help people navigate their cancer journey through cancer coaching. This has been driven by first hand observations that there seems to be very little support for the more holistic and less clinical sides of a persons cancer experience - especially when it comes to the mental wellbeing side.
About us: we are not advertising a specific service here so we don't want to post any information about the actual service name etc as the mods have advised us not to, we are very experienced in the oncology space from a clinical perspective and work with doctors and hospitals regularly.
We are looking for some feedback on what people struggled with most in terms of the mental side of their cancer journey, and what they have found to be most helpful. Any ideas of what you would like to see, what is missing, or feel would be useful would be incredibly helpful for us at this early stage?
Also, has anyone come across cancer coaching as a concept before? What are your thoughts on it generally?
Any feedback would be much appreciated as we are very committed to trying to help the patient have a more holistic experience thorugh their cancer journey.
Best,
Rory.
Comments
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I've struggled the most with just knowing that I have to live with this everyday for the rest of my life. My mental state is getting better, but the first year is so difficult. Or, it was for me.
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Sounds like you're trying to replicate what nurse navigators do, but you want to charge for it.
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Ok AliceBastable, this is definitely good and useful feedback for us. In terms of charging we offer 100% discount for those are in need of financial assistance as we want to make this accessible to as many as possible. Nurse navigators are not present in every country (from what we are seeing). Are there any aspects the nurse navigators overlook or can't help with?
Kksmom3, in terms of what helped your mental state get better, could you explain what helped with that transition? What you recommend for others just setting out on their journey in terms of transitioning into a better place mentally?
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Are you focusing on early stage, in the adjuvant setting or are you interested in the spectrum. My answer will be different depending on your answer. I can say that I agree completely that this is a huge gap, at least in Canada. And here a nurse navigator wouldn’t really help with mental wellness.
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Hi Sadie, we are broadly focussing on:
- Fighters / existing patients (stages 0-3) going through a variety of treatments including but not limited to adjuvant, neoadjuvant chemotherapy.
- Thrivers (i've personally seen my friend and his wife who has been living with stage 4 for some time implement some of the best coaching practices. The thing is they have discovered their meothdology in a very trial and error way which helped with the genesis of the idea as i feel they may have benefitted from this approach much earlier when she was initially diagnosed at stage 2).
- Surivors - we have had feedback around a lack of support once the care team is taken away in terms of what to do next in life
The way this manifests in terms of mental wellness is obviously very different between stages, and also within individuals. We want this to be as personalised as possible for those who feel like they would like to set some personal goals and come up with a plan to feel more empowered and in control of their situation. There is emerging evidence for cancer coaching helping with mental wellness and outcomes from an emergency visits perspective (which is definitely relevent right now with the Covid situation for people who are immunocompromised).We have noted that at least in Ottawa Cancer coaching is being trialled at the moment (i think you can get 6 sessions for free) and this is definitely a positive step change. It's very early as a concept and as always the healthcare system is very much focussed on trying to quantify the benefits or put a "value" on these kind of services. I dont think this has expanded outside of Ontario so far. Australia and the UK are also testing cancer coaching with respect to mental wellness in limited fashions.I think one challenge for us (which is why we want to engage in the community here) is to understand how we could be discovered for people to consider this as an option or how we get the message out there without being too pushy at a difficult time.
We have also se up a free online support group that will be ran via zoom and faciliated by a Psychologist. I'm happy to post a link to this if it's intersting to anyone here.
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What Sadie said above.
Also - is this like life coaching in a way, but targeted specifically to (breast) cancer? How long does that last and are you talking about different service tiers from an app up to in person access x times per month?
If you are doing full spectrum against high-level bucket of mental 'responses' you could target areas specifically like:
1) Getting the news
2) Managing the ups and downs through treatment
3) Managing post-treatment let down (or so I've heard this is a thing)
4) Managing fears of recurrence and dealing with uncertainty
5) And for the Stage 4 among us - managing progression fears and scanxiety
Breast cancer care moves VERY rapidly - you go from fine one day to on the operating table the next week to thrown into chemo, so you don't know what end is up or what is happening and you don't get a chance to full take in the news before the next thing is thrown at you. For that aspect something on What to Expect may be helpful. Ultimately it all relates to managing anxiety and fear of the unknown.
Would I pay for this? Probably not - I am in the UK and was essentially thrown some pamphlets on everything and pointed at the two charities directly in the hospital setting to speak with their folks who manage the mental health stuff, including in-person therapy and also guidance through the financial aspects (if needed). There are numbers I can call day or night to one of those charities to speak to a nurse if I am really struggling, or I can go in-person to even more charities (outside the big guns like Macmillan) for things like counselling and group meet ups or art therapy, etc. These are all well-known nationally and well-supported. I also have a nurse navigator for the medical side of things but she is actually employed by the charity so bridges both the NHS system and the charity system and directs me to one or the other whatever I am having a problem with for who best to speak to.
So.. are you thinking of essentially replicating something like the Macmillan services into other markets but in a for-pay model (not necessarily solely patient-based)?
Have you done a scan of other adjacent products may be accessible to people but they may not know it/be aware? In addition to charity help I can access through my private insurance AND directly through my employer even more mental health stuff through various work apps and counselors that way - but I always forget about that option. In the US I would be surprised if that wasn't also the case.
Maybe Im weird or something, but once I got over the whole you have cancer and then the oh, well its spread, we can't cure it issue and had some massive crying fits I got with the program and moved forward. I haven't accessed any mental services because I assumed it was going to be more mindfulness (got that one down) and I didn't want to talk to a therapist to relive everything on a weekly basis. All the talking and asking why me? and blaming in the world isnt going to make this go away, so I chose instead to own it, work the problem, and not let cancer take away any more of my time and energy than necessary.
Finally - pardon me, but breast cancer is a well-catered for cancer. There is so much research money and awareness poured into this every year, and, for the most part, survival stats are pretty good and even if you are Stage 4 the drugs can buy you quite a bit of time. I would think there could be greater need for a coaching service for either more rare cancers or cancers where you don't get as much time (pancreatic, lung, ovarian) and you may need a mental health coach to help you progress and manage your changing mental health needs in a very compressed time scale.
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My observations:
Who is “we"?
You have used every cliche business and pop culture “codeword" I can think of.
You have not done your homework. Many breast cancer patients find certain terms abhorrent:“Fighter" implies that if someone isn't a perfect enough fighter that when they die it must be their fault because they didn't “fight" hard enough.
“Survivor"- there is no “cure" for breast cancer. Women recur and have metastases many years after initial diagnosis. You are not a “survivor" until you die of something else.
“Thriver" - Seriously? You want to use your friend with Stage IV as your example? Most of the stage IV patients here would describe themselves as struggling rather than “thriving"
Your posts remind me of 1980's or 1990's bullshit corporate speak and “paradigms." Poor grammar too. What are your academic qualifications to be a “cancer coach.?” My highly educated nurse navigators were my heroines.
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I think the most helpful thing you can do I put a newly diagnosed patient in touch with a current or former patient by phone. People without cancer just can’t totally understand and new patients often don’t know the medical terms, what to expect and what questions to ask.
I’ve thought about being this person myself at my hospital but Covid happened, we’ll see.
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I agree with illimae. The best way to help is to put newly diagnosed patients in touch with other patients. That's precisely why this discussion board has been successful.
The simple truth is that until someone has been in our shoes, they just don't know. There are enough articles and books out there by health professionals, including breast surgeons and oncologists, who say that their own diagnosis was a wake up call in terms of their understanding, causing them to realize how insensitive or inappropriate or just plain clueless some of their previous words and advice to patients were.
The fact that you've chosen to group us into pre-labelled categories, Fighters, Thrivers and Survivors, rather than just describing each phase (as you've chosen to break us down) as "those who are...", highlights what I mean. Even if there is a label that I use for myself (I don't; I hate the term "Survivor"), I would never use it to describe someone else, at least not without asking first how they chose to describe themselves.
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Rory, I think you are right in saying that cancer patients could use more support for their mental wellness. However, this is not a job for amateurs, no matter how well-intentioned.
I agree with Beesie and illimae.
Additionally, in my opinion what we need is more licensed therapists (MFCC, social worker, psychologist) with specialized oncology training and experience. These people can be extremely helpful in guiding a patient to “a better place mentally" as you put it, but there are so few of them. Larger cancer centers may have them, but many patients have no access. Even finding such a person in private practice is difficult, and if one finds a therapist with oncology specialization, they are often expensive. In the USA at least, the good ones often don't take insurance because it is too much of a pain. I don't think a coaching service would fill this void. Scholarships and institutional support for professional training in oncology psychology and social work might help, though. Peer support like this discussion board, and in-person support groups moderated by a licensed social worker or psychologist can also be very helpful.
I'm sorry to say it, but the way you put things, it sounds like you are just trying to use us here for market research without telling us who you are or exactly what you have in mind. You speak in clichés and have not indicated that you have any special qualifications to address mental health in cancer patients. But perhaps I misinterpret.
By the way, cancer patients don't have any money.
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I'll add my personal pet peeve to what the other ladies have so ably stated. I hate anyone trying to make money off my disease. I find it abhorrent. If you're talking free services, with volunteers, then maybe you're on to something. But as a money making endeavor? An emphatic no.
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i agree with trishyla. For many with breast cancer, finances become an ongoing issue. Would insurance cover your services? Would there be financial aid available? And who are you or more accurately, who is “we”? Your group labeling is cliche. I have lived with stage IV for almost 9 years.Compared to most, I have had a relatively easy experience but it still sucks. I am living with stage IV but we don’t always get along well
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Ok, so the feedback from everyone is helpful, and I appreciate the time taken to share your thoughts and experiences. Sorry in advance for the length of this post.
In terms of who we are, that's a fair question. I work in the medical technology space between academia and clinicians. I do have a post-graduate qualification in translational medicine and experience within Oncology (for breast cancer detection and treatment personalisation). I don't have a lot of experience of working directly with patients. I have had a lot of friends and friends ask very similar questions when they, or someone they know, gets diagnosed. I'm not here promoting a specific company; this is still early stage and something I'm actively trying to evaluate in terms of feasibility. There are several others who are part of this project, they also have experience within Oncology from a research and scientific background. One of our core team has stage 4 lymphoma and direct experience of using cancer coaching to handle their situation. We are collaborating closely with a registered Psychologist and registered counsellor (who had breast cancer ten years ago). Both the psychologist and the counsellor have experience moderating support groups for cancer patients. On a personal level, I saw my aunt go from a relatively healthy person to death within nine months due to cancer, and this is part of my motivation to drive innovation within Oncology.
The initial focus on breast cancer is because I understand the area from a clinical and scientific perspective. I'm not a cancer patient, so I can't understand that experience. However, I am actively working in the field with doctors from a scientific perspective. To be clear, I am not a coach, nor do I profess to be. The concept isn't that I or any of the healthcare professionals on this project provide the coaching. We are seeking to create a digital coaching platform that can enable patients to self-serve and put their action plan in place, based upon their own needs. If this does not fill the void, there is every chance that this is a bad idea and I'm not here to market something - the goal is to get some feedback to create something useful (and all of the feedback so far is welcomed and very much appreciated).
I understand this is a hard project to get right. There is evidence that in-person cancer coaching works well and has tangible benefits (Macmillan published a good study last year). However, I can't see the global healthcare system adopting this in a widespread fashion any time soon due to the pace of change being very slow.
Shetlandpony, this is true: the ideal solution is more oncology-specific trained psychologists and counsellors. Being pragmatic I don't see this becoming widespread any time soon due to inertia in the system. Due to the way the healthcare system is generally going, the doctors are doing their best but are rushed off their feet and have less time to treat with increasing volumes of people.
As Sondra mentioned, another challenge is timing in terms of breast cancer moving very quickly; a lot of the issues that cancer coaching can help with are most relevant just after being diagnosed. At that point, there is so much to do with that it is unlikely anyone will even realise cancer coaching is an option unless signposted to it. Indeed, breast cancer is quite well supported relative to some other cancers - so yes, it may make sense to focus on another cancer which has less support. Due to my background and experience, I thought the sensible way to look at the delivery of digital cancer coaching is to stay closest to an area where I have some knowledge and understanding.
There are people out there offering cancer coaching who have questionable qualifications, and there are particular concerns surround the evidence base and approach that these coaches are advocating. We thought about trying to connect people to coaches for one to one coaching; however, because cancer coaching is an emerging practice without any official accrediting body, this would need some serious thought.
I completely recognise in retrospect that the categorisation I described was insensitive. I can only say this wasn't the intention. Trying to create something a lot of people can use and find a way to treat people still as individuals is a challenge for us, particularly when it comes to communicating what we are doing. I'm still learning the best way to do this. I did not mean to try and reduce anyone's individuality. The goal is for the digital coaching plans to be personalised based on individual specific needs. Regarding my friend's wife, I know this isn't the norm for stage 4 cancer. She is doing unbelievably well compared to a year ago, and I do think it's important to remember that average statistics by stage do not reflect individual experiences.
Trishyla, Shetlandpony, and exbrnxgrl, I did mention in an earlier post about the financial side but may not have made it clear enough. I am very mindful that many people have financial difficulties when going through cancer. We don't have anything set in stone in terms of how people pay. Something else that's been discussed is a "pay what you feel" model to so we do not exclude due to financial circumstances. We also have considered a "pay one give one model" so for every person that pays another gets a free coaching plan. We have spoken to insurers too, and there is a possibility that if we can create something useful for individuals, then this would be something an insurer could provide access to under an insurance plan.Thanks for reading through a long post. I wanted to try and address all the points and felt it was essential to give the right level of detail.
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rory - I've been lurking and appreciate your long post.
I want to comment about something you acknowledged about the 'rush' just before & after diagnosis. Yes, that's when the help is needed, but I don't think yet another outside layer to throw at a patient would be helpful at that time. I think it would make more sense that your 'group' works with & through the Nurse Navigators at various hospitals and clinics. That way those front line workers can slot someone who needs more help than the actual docs have time to provide into a coaching recommend. Also thenyou are working with medical professionals and likely have more creds with the general public.
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illimae
I missed seeing your post earlier. A friend who has been living with ovarian cancer for 8 or 9 years does some cancer distance mentoring. I don't know any details, or if it's just limited to ovarian or GYN cancers or what. She just happened to mention in in a text. She was my unofficial cancer mentor when I had my creepy year of two cancers. We'd been casual work friends years ago and vaguely stayed in touch on FB. Once she heard about my diagnosis, she was the one person who was there for me every step of the way, even though we're quite far apart geographically. We've turned that into an abiding friendship. If you want, I can ask about her program, because it sounds like she gets paired up with new patients through some organization.
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