Advocacy

Transcript

Hello and welcome to one of a short series of podcasts which will investigate aspects of impact assessment from four different perspectives, or four difference lenses. Please keep the conversation going by Tweeting any thoughts with the #impactframeworks. Thank you for listening. 

My name is Sana Zakaria and I work for NIHR. Today I’m talking to Maeva May who’s the head of policy at the British Heart Foundation about her views and the use of impact assessment for advocacy from her personal and professional perspective. Advocacy is obviously reliant on strong evidence, convincing arguments that resonate with your audience. Now seeing the recent impact of Covid-19 on the charity sector research funding, what kind of impact assessments have featured in your advocacy agenda to the government?

As the audience will well know pretty much every sector has been impacted by the pandemic and the charity sector is no exception, certainly we’ve had to close our retail stores, fund raising has been stopped and unfortunately the hits to the bottom line are really translating to potential cuts in research. Most charities have done everything they could to mitigate that impact, they have tried to reduce a number of jobs, find efficiencies wherever they could really to prioritise research wherever they could, but really at the end of the day cuts had to be part of the consideration. And so you’ll know that the charity sector as a whole predicted a £310 million pound loss in future research funding over this past financial year because of the pandemic. And so we went out really early as a sector and argued for what we called a life sciences charity partnership fund which was an ask of government to just – while charities were covered financially and found new ways to fund raise and as we allowed stores to re open, could the government stabilise a research ecosystem with a time limited, time bound, fund to support research. And to your earlier question about impact assessment. The assessment, or the case that we had to make to government, and to the sector at large was, what would a loss of charity resource funding really translate into, how much impact would it have on the research eco system. As you can imagine the government had so many fires to put out and so much funding to direct in a multitude of areas, that the key was to make the case for why charity research was so critical to the research eco system. So charity research as a whole and the British Heart Foundation isn’t unique in this sense, but has a huge impact on the research funding eco system as a whole. We fund over half of our cardiovascular research that’s non industry research, it’s more than the Medical Research Council and NIHR combined specifically in cardiovascular research. And what we were really concerned about was if we had to cut research how would it (unclear 03:41) cardiovascular science. So we worked with the Institute of Public Policy research to pull together a report that really outlined how charity funded research, not only bring the patient voice to research but equally de risks the transition of academic research into industry. And we painted the impact of what it would mean not to have charity funding between now and 2027. And that’s the kind of assessments that we needed to really convince or make the case for charity funded research. So in the best case scenario what that modelling predicted was that between now and 2027 there’d be 1.4 billion pound less investment in charity funded research but in a worse case scenario if truly it took a long time for the charity sector to recover, for stores to open back up, or if future waves of the pandemic had again adverse impacts, we might be looking at an investment of 4.1 billion pounds less in health R&D. So those kinds of impact assessments are critical really to just cut through the noise and say, you know the reason that we’re having this discussion here is not about the British Heart Foundation, it’s not about what charity’s specifically do, but about a greater discussion about what’s needed for the research eco system to survive. 

Was it particularly challenging undertaking this assessment and articulating that to the government?

It was and there were a couple of challenges. The first is obviously trying to paint the impact of cuts as you are in the midst of the storm. Really modelling data as we were trying to even assess the impact in general to our own organisation, was a huge challenge. And thankfully we worked closely with a wonderful umbrella organisation called The Association of Medical Research Charities, who was harmonising the questions that were being asked of charity sector leaders to say, hey this is the kind of data, this is the kind of information that we need to be able to have productive conversations with government about painting that picture around the impact to charity funded research. I think harmonisation of data, just like everything, is always a challenge. Key approaches, consistency in approaches in how we define the questions. And then obviously it’s always easier to do things in retrospect than future looking. So retrospective studies and analyses are always much, much easier. 

Just switching areas a little bit from the pandemic to cardiovascular research, really interested in your opinion in what kind of evidence is needed to really galvanise the cardiovascular research agenda, given the large disparity between the burden of disease that we see versus the investment that goes into cardiovascular research, and that over the years that large gap, it hasn’t really decreased, what are your views on that?

Yeah it is one of the wicked problems around cardiovascular research spend. And just under served disease areas specifically. So cardiovascular for sure has compared to disease burden under investment in research, but neurological conditions, mental health conditions also have that under spend compared to the disease burden. And we look at that really carefully, obviously within the British Heart Foundation we had been on a year on year growth in growing our own investment in this space and in trying to really understand what is driving disease burden and whether research investment is specifically just cardiovascular research, is the answer to all of this. And I think that much like many of our policy areas where we look at a whole system approach rather than just the one factor in isolation. I do think that we have to take a little bit of a step back and just say, what is it that we need to be doing in non communicable diseases to improve population level as a whole. We know that more people live with more long term conditions than ever before. Right now around one in four of us have two or more long term conditions. And when you’re over 65 years of age that rises to two out of three people are living with conditions such as heart disease in combination with diabetes, or in combination with cancer, etc. So I do think that the way that we look at these questions is not about, can we fund just more cardiovascular specific research. But what can we fund that really prevents people from getting sick in the first place? So prevention research specifically. And when people do get sick, and often live with one or more disease conditions, how do we best support them to live the healthiest lives that they can. So I’ll give you an example. The British Heart Foundation’s a co founder of the UK Prevention Research Partnership and that’s an alliance of research funder that has committed 50 million pounds to look at the primary prevention of non communicable diseases. And really to come with some conclusions, hopefully, that will have policy makers and practitioners just have even more evidence in really ensuring that people maintain healthier lives for longer. But in terms of those impact assessments they’re complicated, right? That means looking at multiple factors into what drives one outcome. I’ll give you a specific example around obesity policy. This current government has committed to an obesity strategy, a really innovative forward leaning strategy to ensure that people can live healthier lives. And the assessments that we need is that we know that one intervention isn’t going to stall the obesity epidemic that we have right now. But a raft of intervention policy interventions in combination might. Really to make a difference in disease burden at this point in time I think we have to be tolerant of the complexity of the problems that we’re looking at and really ensure that we design impact assessments that can address that complexity of the problem, and can ideally look at more than one factor at a time. 

My last question for you today, Maeva, is about science behind paywall. This has been the subject of lots of debates in the last years and with the huge movement around (unclear 11:59) the UK funding landscape is still kind of largely undecided on this working, out the implications of undertaking this approach. Now is there a role for impact assessments here, to drive this agenda forward?

That’s an excellent question. I think the ambitions of NS are fabulous really to ensure that publicly funded research is freely available to the greatest number of people. To (unclear 12:29) platforms, to share our knowledge and grow our knowledge, build it out. But I think equally we have to realise that publishers are a big part of this landscape and first of all we have to build policy with publishers as part of that conversation. One of the sticking points around open access has been around how much you charge for articles to be processed. And obviously publishers ensure that the scientist publishes appropriately pure view, has the appropriate level overview in the figures that go along with it. But really if there was an area that could use some focus it is what are reasonable article processing charges. So these charges that are associated with articles. What does fair mean that will allow publishers to still do the amazing jobs that they do in coordinating and review and ensuring the rigour, that all these articles are published under, while still keeping prices low enough to allow for an open access platform to thrive. Those two do seem a little bit at odds with one another, and funders do have their part in this discussion. For example within the BHF we have supported payment of these fees specifically to ensure that our research is immediately available to anyone in the public who wants to read it. Because we believe in the principals of open access. But the increasing and occasionally skyrocketing fees around article publications, have to be looked at. So I think one impact assessment that’s obvious is really around what a fair reasonable publication fee looks like. And then a little bit of a separate question that you haven’t asked but potentially related. I think impact assessments on what makes for a brilliant research career would be something that would be welcomed to this discussion. So right now part of the reason that this open access discussion really gets thorny is that journal impact factors, so really how well viewed these publications are, has an outsized impact with a researchers career progress. And so we don’t have a clear matrix for example the research who produces brilliant other researchers through their labs, who support science, through team science, collaborative science. What do those impact assessments look like for that type of scientist, for that type of reward, and I think if we put on a couple of impact factor from a career progress in research, I think we would see a shifting conversation as well. 

Do you have any last words you wish to stay to our listeners, Maeva, on advocacy and impact assessments?

Mostly a note of thanks. We cannot do our work as policy professionals advocating for change if we don’t have an evidence base. And while we never have perfect data and we don’t expect perfect data, any kind of data does help fill in the white space and help really home down on what the appropriate policy interventions are or should be. Equally I don’t think I’ll have to convince this audience of it, but evaluation of past policy is as key as future looking. And just a continued call that evaluation be part of everything that we do. 

Thank you for listening to this podcast. It’s one of four in a series exploring different impact lenses, please return to the website to discover the others, and don’t forget to Tweet us your comments and questions at #impactframeworks. And once again, thank you for listening.