11:03pm November 19th 2015
How I’m feeling: Not so well – something may be up. Maybe more on this another post – or later on in this one depending on how tired I become by the end of this one. But also, SO well because I just had some quality time with a good friend of mine – and fellow survivor, Kyla. If you’ve been following along, this is how we met. Since then, we have developed a relationship like no other.
Tonight, Kyla and I had a conversation about our thoughts and experiences with organizations that have really been so integral to everything that we have experienced over the past year and a half-ish. It’s a conversation I’ve had with many other patients and survivors of not only cancer – but other not so fun diseases <- Wow. That was odd to write – “diseases”. Every one of course has their own experiences – but there are some patterns that I have noticed – those of which are mentioned below. I will however, only speak to my own experiences.
Outside of my support system of my friends and family, there have been organizations and people whom have been (and still are) integral part of all of this – of where I stand to date since my diagnosis. I have encountered and have been approached by many – but there are a handful that stand out, that I would drop everything and anything to give back to, that I would recommend to others and that I would encourage you to donate/fundraise or support in any way that you can. They would be Young Adults Cancer Canada, AYA and Princess Margaret Hospital. And I’ll tell you why.
It’s patient engagement.
For the organizations that exist to service patients – to have systems, programs, people, design, process in place in this area -is key. An obvious one, you say? Not exactly. I’ve been approached (and at times hounded) by organizations that exist to support folks like me. But instead treat me like a business lead, looking to get nothing from me but donations – and of course forgetting that I’m a cancer patient and am experiencing everything that can come along with being one. It can really be hurtful, offensive and insulting. They forget who they are dealing with. They forget who they are supposed to be serving. It’s really a shame. They lose touch with why they are in the role they are in. They lose touch with being human. Pause – and allow yourself to be human again.
With these kinds of organizations, their contributions are a little bit of a mystery. You would think that of all people, I would have a crystal clear idea of where all of the time, money and effort goes. I am after all, their direct target market. This is not necessarily always the case. It’s important to think critically and intelligently with regards to where we spend our time, energy and money. I am going to naturally give back to those whom have left me feeling nourished after interacting with them (this by the way, should apply to all people, things, organizations). I have never been one to feel “obligated” to do anything. And I don’t plan on it – ever. And so, just because an organization claims to play a role in something that contributes to me – if it’s not made clear to me how, if I don’t feel it, if there is little regard for me as a human being and as a patient – it puts me in a very difficult position for me to want to contribute. And so, I simply do not.
Here’s the thing. If you can’t get your target audience (aka. those you are supposed to be serving) to back you – who are you really serving? An organization’s customers are their most powerful influencers – if you know what to do with them. If a significant chunk of your cheerleaders fall in to your “customer” segment – it means that you’re on track. You are definitely doing something right!
Anyways, instead of focusing on those who seem to be less in touch, I’d like to spend the rest of the evening highlighting and raving about those whom are doing an absolute phenomenal job!
The one key differentiator: Putting patients at the forefront. And I don’t mean just saying this. I mean doing it. I mean being it. Invest in patient engagement.
The organizations that I am completely ga-ga over add value to me (I would be considered their customer), invest in awareness/transparency of their value-add, do not lose sight of why they exist and have made some wise experience design decisions. I’ll share with you some of my personal experiences with these organizations (SOME – because really, I think I could write a memoir book dedicated to each of these 3) and some smart moves they have made that with no doubt directly contributes to the end output (what they provide to their customers – aka. patients and/or survivors) Here is my love letter to you PMH, YACC and AYA:
Princess Margaret Hospital (PMH)
First off, I have a rockstar oncology team. Writing this just reminded me to send off a love e-note to them to tell them this (we all need to do that more in general, by the way). To me, what makes my team so rockstar-like extends way beyond medical expertise. The medical expertise that I am so fortunate to be in the hands of is superb. But I do understand that medical care is only one sliver of the whole pie. My team hustles for me, provides full support at all stages, has incredible bedside manner, makes me feel comfortable enough for me to turn to them whenever I have breakdowns, manages a relationship with me that allows me to be emotionally and mentally vulnerable with them, and then some. They literally have my life in their hands – and I wouldn’t trade any member of my team for anyone else. Dr. Crump, Denise, Dr. Hodgson – you rock.
My experience with their Psychosocial team has been incredible. And yes, there’s a psychosocial team. I did not know just how rare this is until it came up in conversation with my psychiatrist, Norma. Did you know that in ALL of PMH, there are only two psychiatrists?! Two! Across all cancers. Across all demographics. TWO. And I know that she would make time to see me as often as I feel I need to.
Over the past year, I have met others from all parts of the world whom are desperate to be treated at PMH. They are trying to get in relentlessly – leaving them in tears. And I am just now really beginning to understand why. I often wish that I could package up my badass team, and gift them to someone else who could use them.
There’s a reason PMH is one of the top 5 cancer care centres in the world. I am so grateful and fortunate to be able to call it my healing home.
Young Adult Cancer Canada (YACC)
This organization makes me speechless – and my relationship with them has just begun. I went on an adventure retreat out in Newfoundland with the group. The entire experience was truly designed for patients and survivors – and I knew it. I could feel it immediately.
Geoff, the CEO/Founder of YACC engages directly with the audience that he is set out to impact. He came with us on the retreat – and he shared some very intimate conversations and moments amongst the group with re: to his own story. There is full transparency. No mystery behind where the donated funds, time and energy are invested towards. The message (through the experience) is clear. YACC exists for young adult cancer patients. The organization does a fantastic job at putting it in place, communicating it – and putting those they serve at the forefront of it all. They maintain a good balance of providing professional and moral support – and also providing space for patients to just be. And so, I never feel like I am left hanging – but I also don’t feel babied and treated like a delicate little flower. It’s very respectful and loving – and they make a point to acknowledge and treat everyone as an individual.
If you are going to design a service for a customer, involve them in the design process. This also applies to not for profits. There are a few things in place with YACC that play the role as a constant insights and feedback channel for the team to assess how aligned (or misaligned) they are with re: to servicing young adult cancer patients and survivors. Geoff, Karine, Ally, you should feel very proud of the work you do. Without a doubt – you are making a difference and saving lives by reminding us to live.
Adolescents and Young Adults Oncology Program (AYA)
My first time being exposed to AYA was through my incredible nurse, Laura. They offer so many services specifically designed for adolescent and young adult cancer patients. This is definitely an organization of which I am still getting to know (mostly because there seems to be so much that they do ) – but I know enough to know that they put patients first. I was asked to participate in an insights panel with a group of fellow young adult cancer patients and survivors, they reached out to me to profile me on the UHN website during AYA Cancer Awareness Week for an educational piece and they are always engaging with me (in all the right ways). The team consists of nurses (including my nurse) who work with adolescent and young adult cancer patients on regular basis – and so they are constantly collecting insights that they can then center programs around. Without a question, I know what their intentions are.
The bottom line is that these 3 organizations truly put their patients first. Professionally, I preach (and most importantly practice) customer and human-centric design with those I work with. Guess what? These 3 organizations are practicing some of it. The more customer and human-centricity an organization injects in to everything they do – the closer it reaches it’s fullest most optimized potential.
Every single person who has donated time, money or anything to the above organizations – thank you from the bottom of my heart. Know that I felt all of it. Every bit of it – and I appreciate it. To those who may want to contribute by volunteering and/or with financial support, please consider these three! Give them some lovin’. The support and impact they make on cancer patients and survivors is truly priceless.
P.S. I shared this on Facebook the other day: