Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Setting
2.2. Participants and Recruitment
2.3. Data Collection and Analysis
3. Results
3.1. Theme 1—Different Conceptions of PCM
“There are many who argue that precision medicine is more narrowly focused, while personalized medicine is broader.”(Hospital Management, Code 14)
“Technologically, it is definitely the Next Generation Sequencing-based technology that has kick-started the entire field of precision medicine.”(Academic Leadership, Code 16)
3.2. Theme 2—Complex and Dynamic Relationships Between Actors
“I wish there was more courage to try having a consortium between industry, academia, and all the five sectors in the Penta Helix. They need to be at the table.”(Academic Leadership, Code 16)
“We need a common organization, not necessarily a legal entity, and a clear division of roles.”(Senior Researcher, Code 10)
“Then there are the passionate individuals who make this work.”(Senior Researcher, Code 15)
“Collaboration is the key word here, a good collaboration between academia and healthcare. We can’t do this alone; we have to do it together.”(Senior Physician, Code 3)
“This is a transformation; you have to change the organizational model and the operational model. The entire leadership line must pull in the same direction.”(Academic Leadership, Code 6)
“It’s collaboration, more competencies. It requires a different way of thinking about how healthcare should be organized and funded. And especially within PCM and cancer. Because there are a lot of expensive drugs, both in diagnostics and treatment.”(Senior Physician, Code 5)
3.3. Theme 3—Appropriate Technologies and Structures
“We worked for ten years before we got the diagnostics really up and running, and it’s based on the exceptional expertise of many people across several different disciplines.”(Senior Physician, Code 7)
“But there is also a significant resource, such as research nurses, who are key to this. Therefore, they must be trained in precision medicine.”(Hospital Management, Code 9)
“There is a need to coordinate methodologically and conceptually, develop shared infrastructures for data management, computing, and share/pool resources across stakeholders.”(Hospital Management, Code 12)
“We also need to implement and provide training for doctors, pathologists, and everyone else involved in this.”(Senior Researcher, Code 11)
3.4. Theme 4—New Organizational Forms Facilitate Implementation
“One must find organizational solutions, as multiple specialists need to collaborate, including staff doing diagnostics, clinicians, and informaticians so that a working method can be established.”(Senior Physician, Code 3)
“Have some sort of office that can work on overarching issues, such as legal matters related to the data department, the data department itself, and certain central issues relevant to all initiatives that require national coordination.”(Academic Leadership, Code16)
“We believe that either an infrastructure or a national program is needed to serve as an umbrella organization for PCM, where regional and national entities can come together, along with some sort of office that can work on overarching issues.”(Research Leadership, Code 16)
3.5. Theme 5—Political Engagement and Legislative Efforts
“In the other world [healthcare], everything is very politically driven and short-term focused. The entire healthcare system is governed by the same principles. It’s a large production apparatus.”(Senior Physician, Code 01)
“Healthcare is very slow to change, with rigid systems in place for reporting, financing, and management. It’s not easy to simply start working in entirely new ways.”(Operations Developer, Code 5)
“For instance, the legal framework is highly protective, which is generally good, but at times it can become a barrier.”(Senior Researcher, Code 6)
“The problem is that the global level often comes into play quickly within each company. And this means that you must defend why the global level should invest in Sweden.”(Senior Physician, Code 7)
3.6. Theme 6—Financial Preconditions for Translational Research
“One would like the incentive structure in academia to become more, perhaps, implementation-oriented. What does it mean for the patient? It’s difficult to find those markers that are good.”(Operations Developer, Code 5)
“If I take the X study as an example, it’s a study conducted in four countries that has raised about 100 million SEK from various stakeholders, primarily companies that sponsor medication; without that, it wouldn’t be possible. We allocate some of it to treatment research. The research grants are too small compared to what it costs.”(Senior Researcher, Code 9)
“One must look at precision medicine in cancer; then you can surely present and conduct a socio-economic analysis, and it seems that not much has been done on that.”(Operations Developer, Code 5)
“That is the challenge. The cost will arise somewhere, but the savings will appear in a third or fourth place in another budget.”(Senior Physician, Code 12)
3.7. Theme 7—Patients’ Participation, Ethics, and Equity
“Extremely important that patient organizations actually gain influence.”(Hospital Management, Code 9)
“To achieve precision cancer medicine, we likely need to inform the public that we will need to share more and more data, and whose role is it to do this?”(Senior Physician, Code 11)
“Physical access to this doesn’t necessarily mean regional distribution; it’s just about ensuring we have access. Sometimes, thinning out and distributing can be counterproductive.”(Senior Researcher, Code 9)
4. Discussion
4.1. Summary of Key Findings
4.2. Organizational Inertia in Different Phases of Translation
4.3. Normative Isomorphism and the Emergence of Third-Form Organizations
4.4. The Findings in an International Perspective
4.5. Supportive Management, Financing, and Outcomes Research
4.6. Future Directions
4.7. Strengths and Weaknesses of the Study
5. Conclusions
- Strategic Recommendations for Advancing Personalized Cancer Medicine
- Establish Integrated Governance
- Create joint leadership structures across academia, healthcare, industry, government, and patient groups.
- Align priorities, share resources, and ensure inclusive, transparent decision-making.
- Create Bridging Organizations
- Set up hybrid centers or networks linking research and clinical care.
- Foster collaboration between scientists, clinicians, industry, and patients to accelerate translation.
- Invest in shared infrastructure and sufficient funding
- Build national platforms for data, biobanking, and diagnostics.
- Ensure equitable access and long-term support through pooled or public-private funding models.
- Modernize Policy and Regulation
- Streamline approvals for genomic tests and therapies.
- Update legal frameworks to enable secure data sharing and cross-sector collaboration.
- Build Collaborative Culture and Capacity
- Promote interdisciplinary training and staff exchange between research and care.
- Engage patients as partners in design, governance, and implementation.
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
PCM | personalized cancer medicine |
PM | precision medicine |
KUH | Karolinska University Hospital |
KI | Karolinska Institutet |
RS | Region Stockholm |
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Professional Capacity | Number of Informants |
---|---|
Senior Physician 1 (translational researcher) | 6 |
Senior Researcher (academic, KI) | 4 |
Academic Leadership (KI) | 2 |
Hospital Management (KUH) | 2 |
Operative management (hospital, KUH) | 2 |
Total | 16 |
The interview guide focused on six key domains: |
---|
1. Participants’ understanding of personalized cancer medicine and its implications |
2. Experiences with local PCM initiatives and their organizational context |
3. Perceived barriers to PCM implementation (e.g., technological, financial, regulatory) |
4. Enablers and facilitating conditions (e.g., leadership, infrastructure, collaboration) |
5. Ethical and legal considerations, including data governance and equity of access |
6. Visions for future development and suggestions for sustainable integration into routine care |
Theme | Categories |
---|---|
Different conceptions of PCM | PCM is associated with methods and technologies, including primarily genomics-based diagnostics using new-generation sequencing (NGS) |
PCM is a form of care that generates and analyzes patients’ molecular biomarkers to guide individualized treatments. | |
Precision and personalized medicine are used synonymously with some variation. PCM is not coherently defined. | |
PCM is an emerging concept that incorporates new ideas into former principles of cancer medicine. | |
The PCM is an established concept with expanding content. | |
Complex and dynamic relationships between actors | PCM is conditioned by actors that interact with different roles, incentives, and means of development. |
Dynamic cooperation between actors with different motives for change. | |
Academic leadership must embody the right competencies, be visionary, and identify suitable organizational structures to achieve the desired change. | |
Appropriate technologies and structures | Academic leadership must embody the right competencies, be visionary, and identify suitable organizational structures to achieve the desired change. |
Technologies represent great potential, but there are many challenges to their application in practice. | |
New organizational forms facilitate the implementation | PCM requires new forms of working that entail new types of professionals. |
There is a need for new forms of organization or changes in existing organizations that can mediate cooperation among stakeholders. | |
Some structures need to be developed that can influence the implementation of PCM in cooperation between actors. | |
Political engagement and legislative efforts | The legal conditions are not adapted to current needs, reducing value for patients and society. |
Political interest and engagement determine the conditions for translational research and implementation into healthcare. | |
Financial preconditions for translational research | PCM drives costs and requires investments by all parties to secure the necessary infrastructures. |
Many funders need more funding, concerted funding, and new funding models. | |
Patients’ participation, ethics, and equity | Maintaining ethical standards is essential. |
PCM entails increased complexity and an increased challenge for patient participation. | |
Equality regarding treatment effects and access to services is yet to be achieved. |
Theme | Finding | Insights |
---|---|---|
Different conceptions of PCM | Stakeholders hold diverse and sometimes conflicting understandings of PCM | Variability in definitions (“precision” or “personalized” medicine) affects strategic alignment and expectations across clinical, research, and leadership domains. Shared understanding is foundational for coherent implementation. |
Complex and dynamic relationships between actors | PCM implementation depends on sound, multi-level, interdisciplinary collaboration | Effective collaboration between healthcare, academia, industry, and regulators is essential. Roles and responsibilities must evolve dynamically. Strong leadership and vision are critical to bridge institutional divides. |
Appropriate technologies and structures | Technical capacity and infrastructure are prerequisites for PCM | Advanced technologies (e.g., NGS, bioinformatics) must be embedded within structured workflows. Shared data systems, clinical protocols, and staff training are required for effective operational integration |
New organizational forms facilitate the implementation | New organizational models promote the integration of research and care | Molecular tumor boards, cross-institutional PCM units, and novel staff roles (coordinators, informaticians) enable structured interdisciplinary work and institutionalize PCM processes. |
Political engagement and legislative efforts | Legislative and policy frameworks critically shape PCM progress | Outdated legal structures and fragmented governance hinder data sharing and innovation. Political will, regulatory updates, institutional support, and national strategies are needed for translational initiatives to progress. |
Financial preconditions for translational research | Sustained funding models are necessary for scalability | PCM requires high-cost investments that exceed traditional budgets. Gaps between research funding and clinical operations need bridging. Long-term, integrated financing and value-based assessments are vital. |
Patients’ participation, ethics, and equity | Patient engagement and equity are central ethical imperatives | Patient engagement, patient-reported outcomes, and access to molecular diagnostics and treatments must be addressed. Regional disparities highlight the need for national coordination and inclusion. Ethical governance and advocacy structures support equitable implementation. |
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Masucci, M.; Del Villar Pérez, J.; Mazzocato, P.; Ernberg, I.; Brommels, M. Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study. J. Pers. Med. 2025, 15, 150. https://doi.org/10.3390/jpm15040150
Masucci M, Del Villar Pérez J, Mazzocato P, Ernberg I, Brommels M. Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study. Journal of Personalized Medicine. 2025; 15(4):150. https://doi.org/10.3390/jpm15040150
Chicago/Turabian StyleMasucci, Michele, Jenny Del Villar Pérez, Pamela Mazzocato, Ingemar Ernberg, and Mats Brommels. 2025. "Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study" Journal of Personalized Medicine 15, no. 4: 150. https://doi.org/10.3390/jpm15040150
APA StyleMasucci, M., Del Villar Pérez, J., Mazzocato, P., Ernberg, I., & Brommels, M. (2025). Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study. Journal of Personalized Medicine, 15(4), 150. https://doi.org/10.3390/jpm15040150