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Bringing the Patient Survey & Kidney Cancer Awareness to life each year

by | Feb 4, 2022 | Personal Stories - Blogs

My name is Malcolm Packer. I am Head of Charity Affairs and Communications at Kidney Cancer UK and Kidney Cancer Scotland and have worked with the charity in various capacities for over 15 years.

I hope you may be interested to read a short blog on how this Kidney Cancer Awareness Week comes to life each year, how it fits into the work we do and the many benefits it brings across the whole kidney cancer community.
Kidney Cancer Awareness Week (KCAW) has run in the first full week of February for more than seven years now, but planning starts seven months earlier, way back in August of the previous year. So, as a little insight into what goes into the week each year, I would like to share the ‘top-line’ of how we bring Kidney Cancer Awareness Week to life each year.
August is the time of year when the sun (should be) is beating down and beach holidays are on everyone’s minds, but this is when I start on the road to KCAW. The main driver for KCAW every year are the results from our annual national Kidney Cancer UK Patient Survey, the only one that focuses purely on UK patients and is now entering its ninth year. With support from members of our Healthcare Professional Team, we sit down and go over the previous year’s survey to fine tune the questions, keeping it as ‘patient friendly’ as possible, all the time ensuring we get the very best information from the answers. The survey aims to help us better understand the patients’ journey, how we can better support you and highlight shortfalls patients are experiencing to enable us to address them in the wider world.
The fine tuning of the questions continues with the sharing of many draft versions of the survey to our Patient Council Committee, various highly esteemed clinicians on the charity’s Medical Advisory Team and essentially, the approval from our Healthcare Professional Team.
While the final checks are underway, and before the survey is ready to roll out, we run a  teaser campaign across social media a couple of weeks before launch to alert patients, carers, and general supporters that the survey is on the way: Save The Date!! The route to a successful survey is numbers; the more people who take and complete the survey, the more credible the data. We have built our survey up from around 90 completed surveys in 2015 to over 430 in 2021 and we thank you all for your support.
It’s also around this time I brief our PR agency about events planned for KCAW and share early data from the survey with them. In 2020 we secured grants and sponsorship to allow us to hire a PR agency to promote the survey to the national press, radio, TV, and social media influencers. That year we reached an incredible 42 million+ people with our campaign. But in 2021 without PR support, we reached 170,000. So, with this information in hand, I wrote to and had meetings with several pharmaceutical companies (names available on request) and secured three years’ worth of funding to enable us to retain an agency for January and February in each of the coming years to ensure we raise awareness of kidney cancer amongst the wider public. And don’t worry, these funds were received with a clear ‘hands off’ notice to the pharma’s who were happy to support and stay at a distance from the work.

October/ November
So, in mid-October we launch the survey to the public through our many social media channels; our open Facebook pages for Kidney Cancer UK and Kidney Cancer Scotland, we then post to our three closed Facebook pages; one for surgery patients, the other for carers, and our general Kidney Cancer UK Patient Support Group page. Then on to Twitter, again to our UK and the Scotland accounts, @ing specific people who we think will share the post and encourage people who have kidney cancer outside our circle to take part. Finally, we post to both our UK and Scottish Instagram pages. From launch through to closing the survey at the end of November, we will repeat this entire process around three times every week; so, about twenty-five times in total. Each time finding new images and text to keep the posts fresh and engaging. As well as this we do occasional social media posts to flag Kidney Cancer Awareness Week ‘Coming February 2022!’ to get the week onto people’s radar.
Now, the hammer falls as the survey closes and we need to get the data analysed, discuss the key points coming out of it, get the report document written, the text laid out and corresponding graphics within the report designed and approved… all before Christmas! It’s after all that, I really do need a break.

It’s a new year, a fresh start with new ambitions! No; I hit the ground at 100 mph and pick up where we left off. The Patient Survey Report is ready, it’s proofread by what feels like 100 people and then it’s off to the designer for the final layout. All this time, the PR team we’ve hired are chomping at the bit to get going. We meet on Zoom and talk over phone constantly and eventually agree on three key, headline grabbing, statistics from the survey to spearhead the media campaign. But we don’t release the data to the public from the report yet as we will be using it as the lead story to drive Kidney Cancer Awareness Week. The PR company go off and write two releases, one for the UK (excluding Scotland as they have a different medical board to NICE | The National Institute for Health and Care Excellence) and one for Scotland (focusing on the SMC (Scottish Medicines Consortium)) while I go off and find two clinical spokespeople, one for the UK and another for Scotland, and at least two patient case studies for each region. All of these will be used for quotes in the press releases and all will talk to the media if they request interviews.

I meet with the team to discuss and develop ideas and focus on what patients need, what will catch the wider public’s attention and grab headlines? Remember it is not just our community we are wanting to raise awareness with, it’s about us all sharing this awareness message and reaching out to men and women of all ages. It’s the Joe’s and Johanna’s who have never even heard of kidney cancer but, last week, they saw blood in their pee and ignored it. That’s who we need to reach out to. With kidney cancer there is no racial discrimination, there is no sexual discrimination, and it is certainly not ageist. Kidney cancer doesn’t care who it gets and it’s our job to alert people to that.
So, we settle on activities and this year it’s a special #LWKC Webinar, a week of patient Blogs (and this one), various special awareness presentations to pharmaceutical companies to let them know how important their work is in bringing new drugs to the market, and we target local landmarks and ask them to light up green for us. We had around 38 last year so the pressure is on to beat that this year. People in our amazing Facebook communities rally around, contacting their local landmarks to light up to enormous success. We are so grateful for your support in doing this, you do a fantastic job at it; thank you.

I am furiously creating webpages for Kidney Cancer Awareness Week, adding landmarks that are lighting up to our locations map webpage, helping with blogs and creating individual web pages for them, encouraging people to use the KCAW logo as their profile image to promote the day, all the while still posting like crazy to social media!
The first full week of February…. every year….

This is it; Kidney Cancer Awareness Week has arrived, and seven months of planning comes together with the release of the Patient Survey (you can view previous years surveys here) report to the public and the media. Everything we have been working on over the months comes together and I am so very proud of what we, as a team, continue to achieve, build upon and have delivered in awareness over the last seven years through these actions.

Green Friday
This is the ‘fun day,’ Green Friday is driven by the kidney cancer community and their desire to ‘make a noise. It’s a time to dress up in green, paint your face green, cook green cakes/ dinners, or send all your emails using a green font. We want everyone to do as much as they can to start a conversation about kidney cancer and get tongues wagging. We ask people to flood social media with their Green Friday activities, and pictures. This is a great way to bring Kidney Cancer Awareness Week, the publication of the Kidney Cancer UK Patient Survey and the craziness that we as a team have enjoyed bringing this day to you, to a close.

In conclusion
Kidney Cancer Awareness Week is such an important week. To call it a celebration could feel ridiculous (we are talking about cancer here). At the charity, we feel very passionate that the work we do helps people on so many different levels and at so many stages of their journey. So, we do want to look at this as a celebration, a celebration of yours and our lives and a time to remember those no longer with us, who we loved and lost and the awareness we spread together. If this gets one person to ask their doctor; “could we also check for kidney cancer, I saw a story about someone who had the same as I have,” it has all been worth it.

I hope you find enjoyment in Kidney Cancer Awareness Week and beyond, I’m off for a well earned rest before we start it all again in a few months!
Remember we are here for you if you need us.

<a href="" target="_self">Malcolm Packer</a>

Malcolm Packer

Malcolm is Chief Executive Officer at Kidney Cancer UK and Kidney Cancer Scotland and has worked with the charity in various capacities for over 15 years.