As precision medicine advances rapidly, so does the need to better communicate the nature and implications of the increasingly more complex, better tailored treatments.
This is one of the reasons why the McCann Health Global Scientific Council has defined precision medicine as one of our key areas of focus. We share the first step of our journey in this article.
Precision medicine: what are the issues and why should we care?
The improved science underpinning ‘precision medicine’ is not a new phenomenon, but the ability to recognise differences between disease mechanisms and patient populations via the dissemination of (and access to) sophisticated new diagnostic and therapeutic technology means that this rapidly evolving field has implications for all aspects of the healthcare and medical research ecosystem.
Physicians today have more limitations on their time with patients and struggle not only to keep up to date with these new technologies and the large amounts of data, but also to explain new and complex treatment concepts to patients and their families.
There is an increasingly large gap between researchers and clinicians in academic and national centres of excellence, who have the knowledge and resources to optimally practice precision medicine, and community oncologists, who often may not.
To further exacerbate this gap, it is challenging to find reliable information about precision medicine, with a particular challenge of finding sources that provide a balanced view on both the benefits and the limitations of the field. Where does this leave practising physicians, caregivers and more importantly, patients and the general public?
To better capture the excitement of precision medicine while attempting to unravel some of the complexities and challenges, we convened a unique precision medicine advisory board at the end of 2019.
Comprising leading pharmaceutical company executives, scientific and academic health leaders, and data scientists from some of the best oncology centres in the world, our goal was to understand the communication challenges associated with the advancing field of precision medicine.
Precision medicine: the potential is huge
The potential for precision medicine is evident. “It is one of the most exciting things happening in the healthcare sector. Science and technology advances have made precision medicine no longer an obsession or a dream, it’s become a reality and will become the mainstream in the future of healthcare”, according to our advisory board Co-Chair Dr Zhen Su, Head of Merck KGaA’s global oncology franchise. “This notion that no ‘one size fits all’ has long been an interest and passion for many healthcare providers.”
This potential is reinforced by Dr Martin Murphy, CEO Roundtable on Cancer: “Simply put, it means the future of anybody (with cancer) is embodied in the development of more precise means of diagnoses and then properly treating those with the disease. It’s revolutionary and it’s evolutionary.”
While it is most advanced in oncology, precision medicine has wider, exciting applications beyond oncology and late-stage disease, such as rheumatology, and rare and genetic diseases. We are also seeing many innovative initiatives and partnerships develop in this field. For example, Lung-MAP, a large-scale umbrella trial in non-small cell lung cancer, was one of the first to involve partnerships between several groups including the FDA, NCI, advocacy groups and the pharmaceutical industry. At
the same time, we are seeing companies like Flatiron Health using real-world data to learn from patients who are not in clinical trials.
There are also important advances in the sharing of data, eg Project Data Sphere, which is an important platform that provides researchers with open-access and analytic tools to use when working with data sets from large clinical trials.
Technology is also moving and being applied at pace: wearable devices such as smart watches, computerised pill bottles and other tools are being evaluated as potentially robust sources of patient-reported data. There are also exciting and much-needed opportunities for patients to play an increasing role in the future, eg patients providing valuable insights into the design of clinical trials will lead to secondary endpoints that are most meaningful for patients themselves rather than for the researchers.
…But what are the barriers?
The challenges around precision medicine are illustrated perfectly by looking at lung cancer as an example: treatments such as chemotherapy and radiation were once fairly standard and broadly applied without much distinction between different patients. However, what was once homogeneous has now become heterogeneous.
Different tumour subtypes have been identified, and exciting advances such as next-generation sequencing (NGS) of tumour DNA can more precisely define key characteristics of an individual’s cancer.
Suddenly, one treatment option turns into many, and physicians, particularly those at the community level, struggle to keep up and find it difficult to choose or sequence options.
In addition to new technologies such as NGS, we are seeing the advent of novel trial designs (such as ‘basket’ trials), and many practising physicians may not understand how to apply or contextualise the resulting data. In addition, the ways that clinical trial data and real-world data complement each other may not be clear, not only to physicians but also to regulatory authorities.
As expressed by Professor George Demetri of the Dana- Farber Cancer Institute and Harvard Medical School: “There’s a remarkable need for better communications, both about and around the issues in precision medicine. Because the field is moving so fast, physicians who trained two years ago may not know what’s happening today. They have to keep up. Communicating this is almost impossible through standard medical education channels.”
Alongside these challenges, there are other barriers to contend with. A lack of public awareness and education may hinder trial recruitment, as patients may not understand the role of trials and may view getting the ‘standard’ therapy as undesirable.
Additional barriers to participation in clinical trials may also include the lack of a centralised system to match patients to trials and geographic disparities (eg urban versus rural). Beyond the trial setting, perceptions about the efficacy of a drug and logistical barriers such as the lack of technical expertise or centralised technology, and the lack of coverage by insurance companies can limit the use of new therapies in clinical practice.
Finally, patient privacy and ethical considerations become more acute as greater volumes of personal genetic data are generated through clinical evaluations.
Call to action: what can healthcare communication specialists do to help?
Our advisors all felt passionately that we will only overcome the barriers by developing and supporting communication and education efforts to help patients (and expert caregivers, including physicians, nurses and others) to understand precision medicine and the role of clinical trials in healthcare.
The top ten specific needs identified by our advisors include:
- Bridging the education gap between centres of excellence and the community oncologists
- Creating a common and simplified language around precision medicine for non-experts
- Providing guidance to patients so they are able to ask their doctors appropriate questions and feel confident in doing so
- Giving patients, their physicians and carers patient friendly information about clinical trials: what they can expect and why
- Helping patients receive feedback and the information they would like to have after they have participated in a clinical trial; to do this, trial sponsors will need to be willing and able to facilitate this
- Encouraging patients (and physicians) to share their experiences
- Ensuring that there is a common understanding and standards set in relation to data privacy, balancing the need for privacy vs access to information
- Developing AI-powered algorithms and tools for physicians to triage patients
- Advocating for more standardised regulatory and reimbursement approval processes in the US, UK and Europe
- Empowering and uniting patient advocacy groups to raise awareness around the need to evolve the clinical trial and approval processes, particularly for rare diseases, where the strongest data will only come from small sample sizes.
What’s next for the McCann Health Global Scientific Council in precision medicine?
We are committed to continuing scientific exchange and public dialogue in this important area of medicine. As outlined by our Global Medical Director and Co-Chair of our Advisory Board, Dan Carucci: “Precision medicine is the future of medicine and we as professional health communicators have to stay at the cutting edge so we can help our clients navigate this difficult space.”
With the ongoing support of our advisors, we will continue to communicate that precision medicine is integral to healthcare reform. Dr Su is clear: “There is an enormous need around how we communicate in a clean, clear and trustworthy manner to enable (physicians) to master new treatments and new technology to better select patients and better provide treatment.”
Dr Donna Graham, Medical Oncology Consultant at The Christie NHS Foundation Trust is in agreement with this: “Communication between oncologists and their patients is absolutely critical. There are so many complex issues for patients to grasp in terms of treatments that are available and how certain genomic abnormalities may affect their cancer, their prognosis and their outcomes. Communications companies can really help to try to bridge that gap.”
In line with our mission to make a meaningful difference in healthcare communications and ultimately to patients, we plan to reconvene
our advisors in 2020.
Our aim is to ensure that all our internal team members strengthen their precision medicine expertise, while focusing on the development of external and peer-reviewed communications and tangible tools to benefit the wider medical and patient community. Our call to action will continue as we move to improve the understanding, application and opportunities of precision medicine.