The Alcimed Healthcare team has been exploring the topics of patient advocacy and patient centricity for the past 20+ years, helping its clients understand how patient advocates or patient advocacy groups work, what they can do and how they can contribute to the research and development, the market access, or to improving patient pathway of novel pharmaceutical products and diagnostics.
The challenges related to patient advocacy and patient centricity
What is patient advocacy and what is a patient advocate?
To put it simply, patient advocacy is any activity which ultimately benefits the patient. This definition encompasses a wide variety of activities, organizations, and individuals.
To name just a few:
- Government agencies like the Center for Disease Control and Prevention (CDC), the European Medicine Agency (EMA), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), etc.
- Not-for-profit Patient Advocacy Groups (PAGs), also known as Patient Organizations or Patient Associations in different parts of the world, are organizations that lobby or advocate for one or several diseases and / or causes (g. Alzheimer’s Association, European Multiple Sclerosis Platform, Black Health Matters,…).
- Individual Patient Advocate, whose profile and knowledge of healthcare or science may vary. In this category we find caregivers, family members, as well as for-profit advocates who act like case managers or social workers.
- For-profit PAG: in recent years, there has been an increase in the number of groups staffed by professionals who help patients navigate the healthcare system and reimbursement landscape for a fee, usually covered by the patients and/or their benefactors.
What is the history of patient advocacy?
Patient advocacy is not a new concept. It emerged in the 1950s in the United States in the context of cancer research. In those early days of cancer treatment, patients and their families questioned the ethics of certain clinical research practices.
In the 1970s, patient advocacy gained momentum in the USA as the Patient Rights movement grew. One of the major advocacy organization at the time, the National Welfare Rights Organization successfully managed to influence the Joint Commission to create hospital accreditation standards, as well as the American Hospital Association’s Patient Bill of Rights of 1972.
The utilization of patient advocates by individual patients then gained further momentum in the early 2000s in the USA due to a number of drivers: the professionalization of this activity, the democratization of the Internet and social media, and past successes of patient advocacy and Patient Rights.
What does the future of patient advocacy look like and why should pharmaceutical and medical technology companies should pay attention?
Today, it is not possible anymore to say exactly how many patient advocacy groups exist in the world, as it is probably in the thousands. The sheer number and variety of PAGs is a testimony to the success of this approach. They cover everything from ultra-rare diseases to entire therapeutic areas and span from Facebook groups with a few dozen patients, caregivers and family members focused on patient education and awareness to national and even international foundations able to raise money, fund research, facilitate clinical trial recruitment, improve access and health equity, suggest new clinical guidelines recommendations, influence payers, lobby for new laws, etc.
Up until recently, patient advocates were considered secondary players in the healthcare system. Fortunately, attitudes are shifting, and patients are becoming more and more empowered. At Alcimed, we believe that this trend is here to stay and will further complexify an already complex and heterogeneous landscape. The patient voice carries more and more weight:
- Patients know it, regulators such as the FDA and the EMA know it and are giving more. importance to patient input and may be on the verge of requesting it as part of the submission dossier.
- More and more payers are asking for patient feedback.
- Pharmaceutical and medical technology companies are making concrete steps to involve the patient throughout the years it takes to bring innovation to the market.
What are the stakes of patient advocacy?
This trend is opening new horizons with new challenges and opportunities. It can sometimes feel like trying to find a needle in a haystack to identify the right group to partner with on the right topic. And once you have found your needle, a host of strategic and operational issues arise:
Who are the right partners for this asset or this therapeutic area? How to identify them?
What do advocates expect from healthcare players? How to create true long-term win-win partnerships with advocates?
What feedback on what topic at what frequency and at what stage of the development? And how to implement (or sometimes not) this feedback?
How can we help with your patient advocacy and patient centricity projects?
This patient advocacy trend is opening new horizons with new challenges and opportunities. It can sometimes feel like trying to find a needle in a haystack to identify the right group to partner with on the right topic. And once you have found your needle, a host of strategic and operational issues arise: what creates value for both parties? Who are the right partners for this asset or this therapeutic area? What feedback on what topic at what frequency and at what stage of the development? How to implement (or sometimes not) this feedback?
Our team can help you move forward and make the right decisions on these topics. Over the past decade, we have helped small biotechnology start-ups, large pharmaceutical and medical technology companies explore, adapt, and lead the change in the patient advocacy landscape.
We can help you:
- Understand trends related to advocacy in your specific indication or therapeutic area,
- Identify the relevant stakeholders to partner with,
- Explore topics and partnership modalities,
- Truly embed the patient voice inside your organization.
The types of projects we carry out for our clients in this field are:
EXAMPLES OF RECENT PROJECTS CARRIED OUT FOR OUR CLIENTS IN THE FIELD OF PATIENT ADVOCACY
Our purpose? Helping both private and public decision-makers explore and develop their uncharted territories: new technologies, new offers, new geographies, possible futures, and new ways to innovate.
Located across eight offices around the world (France, Europe, Singapore and the United States), our team is made up of 220 highly-qualified, multicultural and passionate explorers, with a blended science/technology and business culture.
Our dream? To build a team of 1,000 explorers, to design tomorrow's world hand in hand with our clients.
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