HomeBrace Yourself for Impact – in Precision Medicine Implementation
Brace Yourself for Impact – in Precision Medicine Implementation
On April 23rd-24th, Vision Zero Cancer/ SIR will be at the Nordic Precision Medicine Forum in Stockholm and organise a workshop on impact assessment frameworks for Precision Medicine implementation. Facilitated by the EFIS Centre, the outcome of the “Brace Yourself for Impact – Impact models for Precision Medicine Implementation” workshop will be the first out of three impact model for ECHoS, the EU Cancer Mission hubs, and serve as a case study and prototype for how communities can self-assess the impact of their efforts in beating cancer. In true spirit of the EU Cancer mission, the workshop draws on diverse expertise- from mission-driven innovation and change in complex systems over impact assessment framework design to how to implement equitable and sustainable precision medicine- and is a co-production of Vision Zero Cancer, ECHoS, PCM4EU, PRIME-ROSE with the generous support of the Precision Medicine Forum!
Nordic Precision Medicine Forum
22-23 April 2024 | Stockholm
Firmly established as the leading Precision Medicine meeting in the Nordic region, since 2016 the conference has brought together the leading experts from government, industry, technology, research, and healthcare to share knowledge and connect. In 2024 these experts in the field of Precision Medicine will come together once more in Stockholm for the Nordic Precision Medicine Forum.
ECHoS (Establishing Cancer Mission Hubs: Networks and Synergies) is a project aiming to ensure the implementation of the Cancer Mission activities in all member states by establishing and developing Cancer Mission Hubs operating at national, regional, and local levels.
Personalised Cancer Medicine for Europe, PCM4EU, is a project under the Europe’s Beating Cancer Plan by EU4Health. PCM4EU is about facilitating implementation of molecular cancer diagnostics for precision oncology, and the consortium consists of partners from altogether 15 countries across Europe.
A European precision cancer medicine trial network and implementation initiative funded by the EU Cancer Mission. The PRIME-ROSE project builds on a bottom-up, clinician-initiated family of PCM clinical trials which have been particularly successful in bringing up inclusion rates to offer additional lines of treatment and in providing patient benefit.
European Future Innovation System (EFIS) Centre is a not-for-profit (ASBL) policy lab established in December 2014. Their experts have vast experience in all aspects of research and innovation (R&I) policy and ecosystem governance. EFIS challenge the status quo with new policy and practice insights, concepts, methodologies, and analysis. We are committed to helping public sector decision-makers design and implement the R&I systems of the future.
HomeWorkshop on “Measuring Impact” at House of Innovation
Workshop on “Measuring Impact” at House of Innovation
House of Innovation in collaboration with the Department of Accounting at Stockholm School of Economics orgianizes two Workshops on Measuring Impact of Mission Driven Innovation Collaborations during this fall.
Private and public organizations increasingly join forces to solve complex societal challenges, such as the challenge to push healthcare towards prevention and personalized medicine.
The question is how to assess what such inter-organizational collaborations accomplish. How can ‘progress’, ‘performance’ or ‘impact’ be thought of in these contexts, where aims are often far-reaching and materializing in the long-term future.
During the two workshops this autumn 2023 where we will explore these issues by discussing how to measure, what to measure, when to measure, and why to measure. These workshops will serve as a continuation of the WS some of you attended at Leading Health Care in 2022.
The first workshop takes place September 28th at Stockholm School of Economics/House of Innovation (9-12).
Workshop 1
Lukas Goretzki and Roel Boomsma, both researchers with expertise in the area of impact measurement, impact reporting and accountability, will introduce core definitions and models, and engage you in an exercise allowing you to apply insights on your context (Vision Zero Cancer/Testbed Sweden Precision Health Cancer). The following themes will be covered:
Introducing core definitions and perspectives drawing on management accounting knowledge and impact pathways knowledge
Impact or beyond performance?
For whom to measure, and who should measure? (Inside out vs outside in; Upward vs downward accountability; Imposed vs felt accountability).
What are you measuring now? Why? And how can impact measurement be(come) more meaningful for steering an organization?
Measuring and demonstrating impact
Making soft measures hard
Examples from NGOs, private sector, social enterprises, etc
Interactive part/task
The workshop will be led by Lukas Goretzki (Stockholm School of Economics) and Roel Boomsma (University of Sydney) supported by Anna Essén and Jelena Angelis.
The second workshop takes place in November/December, (date TBD), where Jelena Angelis (House of Innovation, Stockholm School of Economics) will introduce a specific framework for mapping impact. She will run an interactive workshop where you can apply this framework The following themes will be covered:
Introduction of the impact pathway tool
Charting the pathway for Vision Zero Cancer/Testbed Sweden Precision Health Cancer
Led by Jelena Angelis supported by Anna Essén
Presentations will be made available after the workshop!
Read more about House of Innovation and mission driven innovation here!
HomePrecision medicine improves cancer care and makes it more equitable and efficient
Precision medicine improves cancer care and makes it more equitable and efficient
One size fits all is no longer applicable. Precision medicine has made several advancements in recent years. Rapid development in research and technology is creating conditions for a transformation of the system. With these developments come challenges and consequences – but which ones? And what exactly is accommodated within the concept of precision medicine? These questions where discussed among 60 participants at a digital round table recently hosted by Vision Zero Cancer and the Confederation of Regional Cancer Centers.
Many precision medicine initiatives are underway. In order to gather the scope of initiatives in Sweden, recapture the state of knowledge and sharpen collaboration, Vision Zero Cancer and the Confederation of Regional Cancer Centers extended invitations to a digital round table. Among the participants were representatives from healthcare, patient associations authorities, industry, academia and other experts.
So what is precision medicine? Precision medicine is about tailoring healthcare for a subgroup of patients. Based on genetics, environment and lifestyle factors, diagnostics, treatments, and decisions can be improved and become more precise. These include molecular biology, genetic sequencing, new imaging techniques, gene therapy, AI, machine learning and data management.
David Gisselsson Nord, MD, PhD, Professor and Specialist Physician, Senior Consultant in molecular pathology in the Southern Healthcare Region, gave examples from the reality of genetic sequencing in childhood cancer. – Precision diagnostics will be of great benefit to many, says Dr. Gisselsson Nord, but he also points out that sometimes it only works for a certain period of time. We cannot have a static treatment when cancer is ever changing by nature.
Advancements in liquid biopsies, AI, blood tests and national collaborations
Richard Rosenquist Brandell, MD, PhD, Professor of clinical genetics at Karolinska Institutet and Senior Physician at Karolinska University Hospital, gave insights about the Swedish national collaboration Genomic Medicine Sweden (GMS), where he is chairman. GMS coordinates the introduction of precision medicine nationwide, with centers at the seven university hospitals and has launched a national genomics platform to share data across the country. – We develop standards of how to analyze and interpret, how to work with precision diagnostics and build teams at each center that can use it in treatment. At the same time, it will be a good resource for research and innovation as we can collect the entire country’s data.
AI can improve the operational steps we already have today, rebuild workflows and, not least, do things that we couldn’t do before. Like predicting certain progress. But this also means that new competences in healthcare are needed, such as computer scientists.
Fredrik Enlund, Associate Professor of molecular pathology and head of the Centre for Diagnostics at Region Kalmar, talked about liquid biopsies, a special sampling that can capture the heterogeneity of tumors. That is, genetic clones and mutations within the same tumor. – Heterogenous tumors are a challenge – which clone is to be primarily treated and what do we do when the patient has received targeted treatment but has developed a clone that can resist the primary treatment? This is where we benefit from liquid biopsies. They can capture that heterogeneity and reduce the risk of resistance if the disease develops. Liquid biopsies can also be used in hard-to-reach tumors to find the right treatment.
The possibilities that comes with AI are great for precision medicine, says Claes Lundström, Adjunct Professor at Linköping University and research director at Sectra. It can save a lot of time for those who work in healthcare and save lives. – AI can improve the operational steps we already have today, rebuild workflows and, not least, do things that we couldn’t do before. Like predicting certain progress. But this also means that new competences in healthcare are needed, such as computer scientists.
Peter Nygren, MD, PhD, Senior Consultant and Professor of cancer pharmacology at Uppsala University and national coordinator of the MEGALiT project told us about the national cross-sectoral collaboration that under controllable conditions implement new ways of working within oncology. – We will test tumor response, feasibility and safety of different drugs on different diagnoses, says Dr. Nygren. It paves the way for more advanced use of precision medicine in the next step.
There are certain crossroads in life where you meet healthcare providers. At the childcare center, at school related health services or in screening programs. While being in contact with healthcare, you could easily add taking a blood test to find biomarkers for cancer. Maybe the end goal could even be a simplified blood test to be taken home?
Precision medicine can also make it possible to earlier on detect diseases and find their predispositions. Beatrice Melin, MD, PhD, Senior Consultant and Professor at the Department of Radiation Sciences at Umeå University, pointed out that simple blood tests can provide many answers. – There are certain crossroads in life where you meet healthcare providers. At the childcare center, at school related health services or in screening programs. While being in contact with healthcare, you could easily add taking a blood test to find biomarkers for cancer. Maybe the end goal could even be a simplified blood test to be taken home?
Authorities investigate the impact and benefits of precision medicine
The roundtable also offered an update from Swedish authorities on their ongoing investigations. Johan Strömblad, Project Manager at the Swedish Agency for Health and Care Services Analysis, talked about the impact of precision medicine on healthcare. – Achieving the vision requires political priorities, resources to make necessary transitions, patient participation, integration of research and clinical practice, and health data amongst other things. We need to ask questions of how we further cross-sectoral development within knowledge management in the organization, what boundaries are applicable to national highly specialized care and which staff need what knowledge.
As treatments become more individualized for each patient, how do we evaluate the societal benefits of treatment?
Anna Alassaad, Pharmacist, and Project Manager at the Dental and Pharmaceutical Benefits Agency, reported on the health economic assessments for precision medicine – how payment models can be developed to address the high costs of treatment and uncertainties. – As treatments become more individualized for each patient, how do we evaluate the societal benefits of treatment? This is one of the themes within the analysis. Another theme is value – precision medicine comes with new possibilities, such as earlier risk identification and possible cure. Are values such as these captured in traditional health economic analyses?
Several collaborative projects are developing precision medicine in cancer
Simon Ekman, MD, PhD, Senior Consultant and Associate Professor of oncology at Karolinska University, talked about the Partnership for Precision Medicine in Cancer (PPMC) – an initiative to strengthen Swedish translational research on precision medicine, with coordination of biobanking, clinical data and research data from patients. PPMC is a virtual organization with regional nodes in University hospitals and regional cancer centers. – We want to achieve better precision in treatments, facilitate follow-ups and find new therapies, says Simon Ekman.
Work at the local level is essential for things to happen on the floor. It’s about building understanding among managers and employees about what precision medicine is. New ways of working are necessary and so is applying new ways of thinking about organization. Academia needs to become a clearer part of healthcare.
Anna Martling, MD, PhD, Professor of Surgery, Senior Consultant at Karolinska University Hospital and Dean of Campus North of Karolinska Institutet, leads the Taskforce for accelerated development of precision medicine. The goal is to accelerate development and coordinate activities within the Stockholm Region by working for implementation in healthcare in order for patients to reap the benefits. – Work at the local level is essential for things to happen on the floor, Dr. Martling says. It’s about building understanding among managers and employees about what precision medicine is. New ways of working are necessary and so is applying new ways of thinking about organization. Academia needs to become a clearer part of healthcare.
We want to achieve better precision in treatments, facilitate follow-ups and find new therapies
The collaboration program of Health & Life Science is based on the Swedish Life Science strategy. Among other things, it states that Sweden should be a leader in the introduction of precision medicine. Frida Lundmark from The Research based Pharmaceutical Industry is coordinating the government’s liaison group around precision medicine. – We’re going to act like the glue holding everything together. We won’t identify or initiate our own initiatives, but rather help and highlight the regional initiatives that are underway and further their conditions towards national dissemination and implementation, says Frida Lundmark. We will also structure proposals for the Government Offices of Sweden based on what is already initiated adding extra muscle and speed to enforcement.
Break-out groups provided input for further analysis
The 60 participants were towards the last hour divided into groups to discuss questions about what efforts will be required in the coming years for precision medicine to ensure good, equitable and effective cancer care, as well as which constellations of actors are needed to achieve this. Each group had been appointed a theme to give lead to the discussions, the themes ranged between technology, clinical trials and policy development.
Among the answers where proposals to standardize and coordinate payment models, data sharing and guidelines nationally. Many pointed to the importance of developing competence for existing staff within precision medicine, but also the need to introduce completely new competences and trainings. Several mentioned that the need, value and effects of different therapies, medicines and health economics must be evaluated. The proposals also touched upon increased understanding of the value of investing in research and placing Sweden on the international map. Further we need to get better at finding and involving patients in order for precision medicine to benefit those intended.
The result of the workshop will be part of the foundation for further work by Vision Zero Cancer and the Confederation of Regional Cancer Centers. It is hoped that these valuable insights can serve as starting points in further analyses and collaborations on various issues.
Thank you to all participants!
Better treatment, better lives
Chemotherapy also gives way to healthy cells. We want to find more precise treatment, focusing on the goal and on providing as little side effects as possible. Both during and after treatment. Because it is not just about survival, it is about continuing to live.
The earlier cancer is detected, the greater are the chances of survival. With new systems and knowledge, we can pick up on symptoms earlier and more quickly come to treatment.
HomeProactivity and prevention in achieving the Vision Zero
Proactivity and prevention in achieving the Vision Zero
Improving people’s living habits is a prerequisite for achieving the vision of zero, which is why we gathered a number of actors from different parts of society for a workshop on prevention related to lung cancer.
The aim was clear: to exchange experiences and put organisations and initiatives on the map to find potential cross-border ways of working together in lung cancer prevention. The breadth of knowledge around prevention ranged from smoking, alcohol, environment impact and diet to the means of technology, the challenges of health care, human motivation and politics.
Discussion groups formulated ideas and possible initiatives with the aim of helping to reduce the number of deaths from cancer. A strong need was highlighted in getting more people to quit smoking, fewer young people and school-age children starting out and also seeing how tougher regulation of the tobacco market can be made possible. At the same time, knowledge needs to increase among people about how your surrounding environment, how much you move and what you eat can significantly affect your risks of getting cancer. The meeting agreed that the focus we can direct on prevention issues today in the form of concrete actions and measures will be repaid in both saved lives and financial savings at societal level in the future.
By gathering through a unique point of contact such as Vision Zero cancer, high hopes were expressed to spark a social debate and create the innovation needed to take a holistic approach to cancer prevention and change people’s behavior.
A third of all cancer depend on living habits. This means that one third of all cancers are preventable. And if fewer people get sick, we reduce people’s suffering, increase public health and save society’s resources. The only question is how.
HomeHow lung cancer can be detected and diagnosed earlier in Sweden
How lung cancer can be detected and diagnosed earlier in Sweden
Lung cancer is today the leading cause of death in Sweden. The earlier that lung cancer is detected, the greater are the chances of survival. A national screening programme has been brought to attention, but much needs to be resolved before we are there. Around 70 participants met digitally during a workshop on early detection and diagnosis of lung cancer hosted by Vision Zero cancer. The realization of a national implementation study for a screening program combined with smoking cessation, health informants, lung health checks, biomarkers, advanced imaging, apps and risk assessment tools based on AI in primary care, were some of the ideas that came up.
Lung cancer causes symptoms that come up late in the course of the disease and assessments are complicated. This means that half of the patients have a spread disease at diagnosis. At the same time, the general public and primary care can become better at paying attention to early symptoms, which can easily be confused with other conditions. With new systems and knowledge, we can pick up on symptoms earlier and more quickly come to treatment. And get a better chance of reaching the ‘vision zero’ – that zero people will die as a result of cancer and that more people will live longer and better.
Detecting the cancer in stage 1 gives a two-year survival rate of 80 percent. In stage 4, the two-year survival rate is 10 percent.
The workshop began with insights on why early detection of lung cancer is important, what other countries do on the subject and which needs are prominent in primary care. We were also updated on the expected results of Region Stockholm’s planned pilot study on lung cancer screening in connection with mammography, research on how biomarkers can improve early detection of lung cancer and an exchange of knowledge with the UK. Moderator Lisa Kirsebom interviewed a panel of representatives from health care, government and politics about what is left to solve before a national screening program can become a reality in Sweden.
The participants were then divided into groups to discuss two questions. The first about what data and knowledge we need to foster moving forward. Among other things, the difficulties in finding the right people to screen were highlighted – in the Stockholm region pilot study there are only women, how do we reach men who smoke? And how do we reach newcomers from countries where smoking is more common than in Sweden and where authorities are viewed with scepticism?
– The group that smokes the most can be the hardest to get to participate in screening programs” says one workshop participant. We also need to reach out with information on quitting smoking. Health informants can build trust and find new ways to reach out. Here we can also collect the knowledge generated during this year with covid-19 – how we can overcome the barriers of language and culture.
The group that smokes the most can be the hardest to get to participate in screening programs” says one workshop participant. We also need to reach out with information on quitting smoking.
At the same time, about 15 percent of those who get lung cancer have never smoked. To find them, the health care system, especially within primary care, needs new tools and more support.
The second question regarded in which areas there are needs for strategic and targeted cooperation to detect lung cancer earlier. The discussions led to concrete proposals. An app that combines the patient’s self-perceived symptoms with the geographic presence of radon. The continued strengthened research on radiology and biomarkers were some proposals that came up. Several participants expressed the need and interest to cooperate in the realization of a national implementation study. Allow a number of demonstrative projects where strategies can be tested, some of the workshop participants highlighted e.g. screening, mobile screening, biomarker testing, ways to attract people to screening, collaboration with primary care, digital health surveys, health informants and more general lung health checks.
About 15 percent of those who get lung cancer have never smoked. To find them, the health care system, especially within primary care, needs new tools and more support.
Examples of other ideas highlighted were collaboration with schools/universities/employers both around prevention and early detection, cancer-certified health centres with special expertise on early detection and collaboration between primary care and the country’s diagnostic centre in case of diffuse symptoms.
We are all very aware that something must happen now. I believe a lot in modern technology, algorithms and so forth. And to get information to further this process – that we patients are allowed to record and document symptoms.
The issue of including patients in the development of models, not only via data but also via experience, also came up. The workshop ended with Karin Liljelund, patient representative and vice chairman of the Lung Cancer Association, pointing out that patients would like to share their data. – I appreciate that we patients are invited. We are all very aware that something must happen now. I believe a lot in modern technology, algorithms and so forth. And to get information to further this process – that we patients are allowed to record and document symptoms.
Are you curious about the introductory insights?
The importance of early detection and diagnosis
Mikael Johansson, Associate Professor and Senior Physician Oncology at Norrland University Hospital, talked about the importance of early detection and diagnosis. Over half of all lung cancer cases are diagnosed at stage 4, when the disease is metastatic and incurable. Approximately 25 percent is diagnosed in stages 1 and 2, when it can be treated with surgery or precision radiation therapy. – Detecting the cancer in stage 1 gives a two-year survival rate of 80 percent. In stage 4, the two-year survival rate is 10 percent. Lung cancer screening increases survival, Mikael says. Sweden urgently needs to implement screening of risk groups. But how do we reach them, how do we organize ourselves, how do we choose better audiences?
What does the rest of the world do?
Ebba Hallersjö Hult, Head of the innovation milieu Vision Zero Cancer, gave an outlook on the world. The United States and South Korea have introduced targeted screening programs. Canada and China also carry out studies and plans towards this. The UK has conducted several studies and tested strategies to find and reach the right people. In Norway, an implementation study will start in 2021 in which approximately 1,000 high-risk people will be screened. The focus is to build knowledge about cost-effectiveness of lung cancer screening. Denmark is considering launching a small-scale screening program to map the impact on capacity needs in subsequent diagnostics. There too is a big ongoing discussion about how best to reach the risk group. In the EU, Croatia, a high-incidence country, has begun implementation. Also underway are a lot of exiting steps taken in the EU within the study 4-IN-THE-LUNG-RUN. The Study, within the Horizon 2020 programme, evaluates different strategies for lung cancer screening in 2020-2024. The study involves medical research institutions from Holland, Germany, England, France, Spain and Italy. – Sweden is timely with discussions, research and studies. Now is the time to take it further, Ebba concludes.
Decision support in primary care to detect lung cancer earlier
It is a challenge to find patients who have cancer among all those who seek medical treatment within primary care, says Elinor Nemlander, General Practitioner at Sophiahemmet Primary Care Center and PhD student at Karolinska Institutet. In primary care, symptoms that may exist due to cancer are common. Coughing is the fourth most common cause for visiting. Elinor Nemlander believes in risk assessment tools, which can help primary care detect the right patients. For this, primary care-based clinical research is needed on the predictive value of symptoms, which is exactly the research that Elinor is undertaking.
Pilot study and cost-effectiveness of lung cancer screening in conjunction with mammography
Screening can require significant resources if the precision in the selection of people to screen is not accurate. The Stockholm-Gotland region has investigated the interest in and cost-effectiveness of lung cancer screening. In the pilot project, 1,727 women were asked questions about smoking habits and health at their mammography screening. 90% said they were also interested in lung cancer screening. Based on this, IHE calculated that lung cancer screening is cost-effective and lowers the mortality rate of patients 55-74 years of age. Telling us about this was Gunnar Wagenius, Senior Physician at Karolinska University Hospital and Chairman of the National Lung Cancer Registry, and Katarina Steen Carlsson, Associate Professor of Health Economics at Lund University and IHE.
Conclusions from expert meeting with England on lung cancer screening
Suzanne Håkansson, Senior Director Government Affairs, AstraZeneca AB and a member of Vision Zero Cancer’s core team shared words on a meeting and knowledge exchange held with British experts which Vision Zero cancer arranged earlier this autumn. Last year, the UK launched its Long-Term Cancer Plan, with a couple of quantitative targets. The NHS has encouraged development projects to contribute to the objectives. Here you will find more about the UK’s success factors for lung cancer screening.
Biomarkers to improve early detection of lung cancer
Mattias Johansson, PhD, Scientist, Genetic Epidemiology Group at the International Agency for Research on Cancer (IARC), talked about his research on how biomarkers can improve CT lung cancer screening. After a long study including 1 200 proteins, he and the research team have scaled down the work to seven biomarkers. These can significantly improve prediction, compared to a standard risk model based on smoking data. The study is ongoing. – Next year we will try to validate the panel. In a year and a half, we hope that we will have a usable tool to really improve the inclusion criteria and follow-up process.
Panel discussions on issues left to solve and what obstacles to overcome
After the introductory talks, the moderator Lisa Kirsebom, science journalist and natural scientist, interviewed a panel consisting of Jan Nyman, Associate Professor andSenior physician Oncology at Sahlgrenska University Hospital and Chairman of the National Working Group for Lung Cancer, Mattias Fredriksson, Head of Unit responsible for national guidelines and screening at the National Board of Health and Welfare from the National Board of Health and Welfare, Jan Adolfsson, Associate Professor and Physician, Member of the National Screening Council and Camilla Waltersson Grönvall, Member of Parliament, Ordinary member of the Committee on Health and Welfare and spokesperson for the party Moderaterna.
Jan Nyman opens the discussion with stating that the screening population is set – 55-74-year-olds who are or have been heavy smokers. The question is now rather how to get them to come to screening. Mattias points out that other screening programs are often aimed at people who can be found using social security numbers. But now it is a group with a risk behaviour we need to find, they are not a given part of the population. In addition, about 15 percent of patients with lung cancer have never smoked. To find them, there must be other ways than screening.
Another aspect of establishing a screening program is how long it takes. Jan Adolfsson points out that the road to a national screening program is long. He compares it to mammography screening, which took 7-8 years to set up, and colorectal cancer screening, where the recommendation came in 2012 but implementation has not yet happened in many regions. From a political point of view, Camilla Waltersson Grönvall wants to see solutions move faster. For example, through more pilot studies, which Mattias Fredriksson welcomes. All initiatives are valuable and teach us more which moves us further towards making a final decision, he says.
Jan Adolfsson emphasizes that it is possible to start with efforts aimed at quitting smoking right away. And that it is the most cost-effective solution. At the same time, efforts are not mutually exclusive and can with advantage take place in parallel.
The panel agrees that the national perspective is important. Both for pilot studies, tools in primary care and for the possible screening recommendation.
How do we detect cancer earlier?
The earlier cancer is detected, the greater the chances of survival. With new systems and knowledge, we can catch up on symptoms earlier and more quickly come to treatment. And get more chances to reach the vision of zero persons dying from cancer and more people living longer and better.
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Brace Yourself for Impact – in Precision Medicine Implementation
