How to Successfully Engage Policymakers for Sarcoma Patients
An Interview with Richard Davidson, Sarcoma UK Chief Executive
Interview by Gabi Ott, SPAGN Volunteer
Richard Davidson, Chief Executive of Sarcoma UK, is passionate about changes that patients can make at the policy level.
In this post we focus on one specific area where Sarcoma UK has really set a standard: How to advocate for changes at the policy level.
Richard Davidson, Chief Executive of Sarcoma UK, shares his insights into policy and public affairs work in a talk with SPAGN Volunteer Gabi Ott.
Chancellor of the Exchequer Rt Hon Jeremy Hunt MP (centre) and Richard Davidson (right)
Celebrity ambassador TommyInnit
The institutional development of Sarcoma UK is really impressive -- there are so many things that member organisations of SPAGN could learn from. Today we focus on one specific aspect where Sarcoma UK has set standards: advocating for changes at the policy and institutional level.
First, let’s talk about the why: Why is it important for sarcoma patients and patient organisations to address the policy level?
Since sarcoma is such a rare cancer, patients and their families need to be represented and heard (and protected) and there are things that we need to change about the system. I have witnessed this from my own father-in-law's experience, when he had sarcoma and died from it: that things needed to be changed, there needed to be more investment, more awareness and better understanding of sarcoma.
In the UK, sarcoma was almost a forgotten cancer. More common cancers such as breast, prostate, bowel cancer attracted researchers and clinicians into the field and into their specialisations. But sarcoma was really lagging behind, so we felt that not only did we need to give patients support, but we also needed to give patients a voice, so they could influence the National Health Service as well as the wider policy environment in the UK. Although we didn't start by doing that type of work in the early years, it quickly became apparent that we needed to do that if we were to make change. It also became clear that we had to hire professionals to do this work.
And it's easier to do that as a group rather than as an individual. That's why both advocacy and public affairs are vitally important.
What results has Sarcoma UK achieved in this respect?
Investment in policy and public affairs and advocacy is hard to quantify and evaluate. It's not as easy as saying this is what we set out to do in terms of fundraising, or in terms of research, and this is what we achieved.
What we did early on was to articulate what we thought needed to happen, and what the challenges in the system were. Where could progress be made?
And so very early on, we helped launch the National Sarcoma Service specification in the UK, which introduced set levels defining best practice and establishing what the minimum standards were that people could expect. That was important. Patients felt very passionately about this, as did healthcare professionals. Now, our role as an advocacy organization is to keep an eye on the implementation. Because even if you are successful in introducing a change, it doesn't mean that it's always going to be that way. You need to keep up the pressure and make sure that the standards are maintained.
I am particularly proud of Sarcoma UK’s work on patient involvement. Patients are involved in different areas of our work: in research grant committees, in patient information, in raising awareness or in our policy and public affairs activity. We want sarcoma patients to be involved in all aspects of cancer policy delivery.
UK Sarcoma founder and SPAGN Honorary President Roger Wilson and Sheelagh Wilson in Downing Street on September 25, 2023
It's about making sure that patients have a voice and are heard.
Earlier this year, we organised briefings for Parliamentarians on problems facing younger patients with sarcoma, and it was incredibly well attended. About 70 to 80 Members of Parliament (MPs) came along and heard from patients about their experience – young people that are undergoing an extremely invasive treatment and have very little support on an ongoing basis. Another briefing in the Scottish Parliament resulted in changes to the way things are done there. When organising such activities, it is crucial to be clear about what you want, what your ask is of people. Is it funding? Is it writing to a minister? Is it signing a petition? You need to be clear about what success looks like for you.
MP Gillian Keegan in 2020 attending a Sarcoma UK event to draw attention to sarcoma as the loneliest cancer; she has been Education Secretary since 2022
A few years ago, we were selected as the charity of the year by 10 Downing Street. One of our supporters was a very senior member in the government. We benefited hugely from that relationship. They mentored us, held events and receptions to raise funds on our behalf, and that relationship has continued. We just hosted an event on September 25, 2023, with the Chancellor of the Exchequer, Jeremy Hunt, at 11 Downing Street to raise awareness and money for ultra-rare sarcomas. We know that in the UK and overseas, ultra-rare sarcomas are even more lonely and even more forgotten than the more common forms. And in November, we will host a reception at 10 Downing Street to give awards to our biggest supporters. This will involve celebrity ambassadors.
One of the things in our strategy in the last two years has been trying to encourage other organisations to fund research. Helping them, making the case, going to them, potentially suggesting that we co-fund something, for example, that we fund 50/50. That's a way of leveraging more money for research together with partners. By putting money on the table and encouraging other organisations to match it, more money will go into sarcoma research, which is what we all want.
Another aim of advocacy and public affairs activities is to influence what research looks like, what criteria are applied, the restrictions and legislation around that: whether it's about animals involved in research or regulation or clinical trials, there's lots of issues around research that are not just about funding.
What would be your advice for other organisations, how should they go about stepping up work at the policy level?
The very first thing is to work out what the key challenges are. What are the key problems that you are facing? Is it around involvement? Is it around clinical trials? Is it around access? Do you want a big push on early diagnosis? All those things? Try to prioritise. And then, the next important step is to work out which ones can you influence.
If your patients want access to the latest treatments, or they want people to be diagnosed earlier, if those are the bigger issues, then those are the ones that you should focus on.
Another early exercise is to look at the stakeholders out there and make a stakeholder map: Who is active? Who is doing what? Whom are you trying to influence? Who are the key decision makers? Who can help us?
This exercise of thinking about what role you have and what role other people have is really key. For example, if it's about investment into research and if you're a small organisation and you know that actually setting up a research programme and doing your own research and doing peer review and so on is too difficult, it might be that one of the things that you can do as an organisation is to support other people in doing that research. So that's a different way around it.
And then make sure that you involve your stakeholders, involve your patients, because as an organisation, you're there to protect and defend and advocate on behalf of your patient population. So ask them what is important to them, and ask them what they want you to focus on.
Tied on to that is building bridges and partnerships. This may mean a cooperation with other organizations or learning from other organisations. They might even be active in a completely different field. For example, we share a building with a diabetes charity, and we learn from one another. These bridges offer new perspectives and new connections. They can be mutually beneficial.
Lastly, on fund raising, we try to get unrestricted funding, but we also make sure that our impact is known and that funders see the benefit of advocacy. Then they will be more inclined to support us.
What advocacy needs do you see at the international policy level?
There are lots of issues that are definitely worth pursuing together at the international level.
There is the issue of clinical trials. The patient numbers aren't big enough in the UK, they're not big enough in Germany or other countries. Coming together and working collaboratively on that is incredibly important.
Then of course, we can learn from one another. A lot of useful and important things are done in individual countries, whether it is pathway management, mental health provision or clinical nurse specialist provision, for example. It’s about that expertise and information and hearing about what goes on in other countries, because that will help build a bigger picture and arm patient groups and advocacy groups across Europe and the globe.
What are Sarcoma UK’s current plans?
We are exactly mid-way through our five-year strategy, and we are currently doing a review of progress and defining what is next for us as an organisation.
One of the big positives that have come out of the last few years is around partnerships: we have a focus on sarcomas and their place in the wider cancer world, but also, more generally, on issues that we can work on with other people to make progress. We are about to launch a collaboration with other childhood cancer charities because we know that we are not going to win some of these big corporate and foundation funds on our own. So we are working with a leukemia charity and a brain tumor charity to focus on how we can raise money and awareness of childhood cancers more generally.
Similarly, we have invested a lot in the last few years in patient involvement to make sure that all our work is informed and influenced by patients. But we need to make sure that we are abreast of all the latest issues and how things are changing and to determine whether we should have a different role going forward. We want to be clear what we can do versus what other people can do, and to either work in partnership or lobby or campaign in a much more active way to make sure that the outlook for sarcoma patients is improved.
Every five years, we do a UK-wide sarcoma patient survey. So far, we've done two, and we're about to do a third one. We survey patients, and we're happy to share the questions we ask with other organisations who are interested in doing something similar. We send the survey to patients and their families. It's a really good way to check how people are feeling about their treatment, the waiting times, the kind of transport to the sarcoma centers, and what they felt comfortable with. So it covers a huge range of issues around their experience. It also informs the work we do going forward. So that is something that we will definitely do again next year. This will feed into our next report in 2025.
Also, the situation of data on sarcoma needs to be improved. We have a real problem with access to reliable data on outcomes and incidence. For example, information on people's stage is very poor. Healthcare professionals don't always log that kind of information. We have to make sure that healthcare professionals know the importance of data and capture that information and make sure it's reported. Because the more data, the more information, the bigger the picture, and the clearer the actions that we will be able to take in a particular area. Data is key.
Bio: With a background in policy and public affairs, Richard Davidson has deep knowledge and experience in lobbying and advocacy on health issues. Prior to joining Sarcoma UK in 2018, he led teams in Cancer Research UK and the blood cancer charity Anthony Nolan, working on smoke-free legislation and other cancer strategies. Richard is passionate about the change that patients and people can make to policy.
Photo credits: Sarcoma UK, Uli Deck