Except for direct participation in clinical trials and post-approval activities such as disease education, patient involvement in the biopharmaceutical development process remains episodic and restricted. Although this is slowly changing, patient involvement at each step of a product lifecycle is not yet standard practice for most companies.
WHY Engaging Patients is Key for Pharma’s Success
If it is not already, ensuring patient satisfaction and engagement should be a top priority for all pharma companies worldwide. Engaged patients and sales profits go hand-in-hand. In fact, analyses have found that the most successful pharmaceutical companies are those that regularly monitor, evaluate, and optimize all of their programs through ongoing research with key stakeholders, including patients.
Further, patient engagement directly influences health outcomes. There may be some products that the patients are simply not interested in, and non-compliance is a major issue. Thus, development of medicines using a patient-centric approach allows pharma to more closely meet patient needs. In turn, this will improve their lives in ways that are meaningful to the patients and their families.
To this end, collection of data, including real-world and survey data, to assess the patients’ current satisfaction, wants, and needs is critical. However, there is a need for harmonized approaches to such data collection and to engaging patient communities in order to ensure a truly “patient-centric” development process.
What is “Patient Centricity?”
As the government, payers, and healthcare providers (HCPs) all move towards a more outcome (rather than product)-focused system, pharma is inevitably becoming more patient-centric. Just as there are multiple definitions of “patient centricity,” there are even more approaches on how to implement patient-centric culture within a company or department.
One suggested definition comes from a study published in BMJ Innovations in 2017. In this study, the authors defined patient centricity as “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.” In other words, patients should be involved in any and all decisions related to their health, from clinical trial design to marketing and creation of educational materials to direct communication with their physician. Importantly, the above definition was established by a collaborative effort by the industry (AstraZeneca) and patient representatives, making it truly patient-centric.
What do Patients Care About?
The same study group also outlined a number of principles of high importance to patients and caregivers, as follows:
- Understand the patients’ needs and experiences
- Help make sure that the people who need medicines have access to them and that this is affordable
- Communicate transparent and unbiased information on a patient’s disease, treatment options, and available resources with care and compassion
- Provide easy-to-understand and convenient information in plain language
- Equip patients to make informed choices about their healthcare and treatment options
- Listen and respond to patients’ feedback with respect and humility
- Partner with patients to innovate and measure impact and outcomes that are important to patients
- Provide access to support programs and resources to help patients improve quality of life
- Help empower patients to help other patients and their families
The concept of patient centricity is not new. However, how to make it a standard practice to embed patient perspective within the culture of an organization and integrate it into the decision-making process remains a challenge.
Importance of Early Patient Engagement
Particularly, earlier, broader, and deeper engagement of patients offers a huge opportunity for pharma to optimize the commercial performance of a product or service by allowing the patients to have a say from the get-go. Although it may come with higher upfront costs, engaging patients and taking a patient-centric approach can have multiple benefits. Among others, these include:
- Improved public perception of the company, organization, brand, and/or product
- Better and more efficient patient recruitment, retention, and engagement in clinical trials, and thereby higher quality data
- Improved solutions and end product secondary to the higher data quality
- Better patient outcomes
- Long-term cost-savings
Currently, the healthcare industry is one of very few industries in which the customers (i.e. patients) are not always treated like paying and valued customers. Imagine going to a restaurant and not being offered a menu because there is one meal that most people have ordered in the past, and therefore that is what you will get too. Or going wedding dress/suit shopping, but instead of working together with the consultant to decide which style and color will fit you best, they simply give their opinion without taking yours into account. Why should healthcare be any different than other industries?
HOW Engaged Patients Will Lead to Better Health Outcomes
Importance of Health Literacy
More than ever, patients are becoming – or wanting to become – actively involved in their health journey. A major driver responsible for this shift is the ease at which information is now available at our fingertips. Through these advances in information technologies, a patient can quickly find information on their diagnosis and learn about the different treatment options. In turn, this gives them a sense of being in control of their own health. In light of this, it is important that HCPs discuss the diagnosis and management strategies with the patients to come to a joint decision. As useful as it is for many purposes, the internet is also full of misinformation and “alternative” treatments and cures. Hence, pharma and HCPs must take a proactive approach to educating and engaging with the patients, directing them to reliable sources of information.
Enhancing the health literacy of the patients will not only help empower them but moreover allow them to self-manage their disease. Further, it will help them better understand the connection between their condition and lifestyle choices, and how other aspects of their general health and wellbeing may affect the treatment outcomes.
Collaboration with HCPs
With more readily available information and better education, patients are looking to collaborate with HCPs rather than passively receive care. More informed patients will strike for deeper engagements with the healthcare team, and, when achieved, will become empowered to take charge of their health journey. As an added bonus, patients with access to their health information and insight into their condition are more likely to recognize the relationship between an action (e.g. taking their medication or exercising more) and the associated health outcome.
Engagement with Other Patients
As another benefit of the internet and mobile proximity, patients are now able to engage and connect with other patients more readily than ever before. Patients want to learn from others with the same disease and with experience in managing their condition. In many cases, the opinions from their peers is considered as valuable as that of their doctor. However, similar to other sources of information on the internet, it is important for pharma and HCPs to guide their patients in terms of which patient groups are evidence-based. Without such guidance, the patients are at risk of falling for anecdotal stories without any scientific basis, potentially risking their health outcomes.
WHAT Pharma Can do to Create Patient Engagement and Empowerment
The barriers to patient engagement can be broadly divided into patient-, provider-, and industry-related barriers. From pharma’s point-of-view, there are several things that can be done to engage and empower the patients. These include:
- Shifting the focus from the disease to the patient (“what matters to you?” rather than “what is the matter?”)
- Providing information and services that help patients manage their own health from the time when starting a medication
- Providing education and reminding the patients about what the product has done to improve their and others’ lives, along with assurance that the profits are reinvested in R&D
- Working with Medical Affairs teams to translate the input from the patient representatives within the internal process and vice versa
- Moving to a more individualized approach to medicine rather than “one-size-fits-all.” This includes seeking input from patients from various cultural and religious backgrounds, minorities, and other subpopulations
- Collecting, tracking, and sharing patient feedback and values
- Involving patient representatives in clinical trial protocol development, patient recruitment, choosing the outcomes of interest, and disseminating the results to their peers
- Ensuring that clinical trials are easily accessible by the patients by removing barriers. These include the need for too many clinic visits, inconvenient travel, or high costs/loss of income from having to take time off work to participate
- Involving patients in prioritizing R&D efforts
- Engaging patient representatives when designing educational materials for other patients
- Using plain language when communicating with patients and patient representatives
- Utilizing digital technologies to more efficiently connect with patients and allowing them to be active partners in managing their health
- Improving patient support programs (PSPs) through patient input
- Leveraging PSPs to further engage and empower patients
- Collecting insights on the needs of the patients from the patients in addition to from HCPs
Patient Support Programs and Associations
As mentioned above, one approach to creating and maintaining patient engagement is through PSPs and patient associations. Patient associations exist due to patient needs that are not being met by the healthcare system of HCPs. In addition to supporting patients, patient associations help educate all stakeholders, lobby/advocate, stimulate research, and help in the search for cure. Partnering with PSPs and patient associations has multiple benefits for pharma. Among many others, these include help with distributing patient surveys and finding and enrolling patients for clinical trials.
PSPs can also create focus groups to review study processes, designs, outcomes, and analyses. In addition, they can serve as a place to conduct preliminary research or test runs. As some patients unfortunately have negative impressions of “big pharma,” having a patient association promote a study or product can moreover be a game-changer to place the brand in a better light.
PSPs and patient associations can range from small, regional groups of patients with the same disease, disease type, or symptom to large national groups and international associations spanning multiple conditions (e.g. PatientsLikeMe and Carenity). Further, there are some noteworthy international projects led by patient groups in collaboration with other key stakeholders, such as PARADIGM, EUPATI, and PFMD. These all aim to enhance patient involvement throughout the lifecycle of medicines.
Patient Advisory Boards
There is an urgent need to address the gap between what pharma and HCPs think the patients need vs. what they actually want in terms of treatments, tools, services, information, and education. To address this discrepancy, patient advisory boards are an invaluable tool for pharma. In addition to the above benefits of cooperating with patient associations, PSPs can also help pharma access and connect with patient opinion leaders for advisory boards.
It is important for pharma not to become “the friend that only calls when they need something.” The relationship with the patient advisors should be ongoing and mutually beneficial. While Pharma get increased access to the patients and their insights, the patient get increased influence.
Similar to advisory boards with other key opinion leaders, patient advisory boards can serve multiple purposes. In addition to gathering insights, these represent a good opportunity for patients to provide input. For example, this can include on clinical trial protocols, online resources, educational materials, and any other matters. However, just like it is a potential barrier for clinical trial participation, the need to take time off work and travel to an in-person advisory board meeting limits the patient advisor engagement and participation.
As one potential solution, by moving the meetings online, the patient advisors can provide their responses at the time(s) and place that suit them best. This flexibility allows high engagement and completion rates, and lets the advisors take the time to think about their answers before replying to the questions posed and to their peers’ comments. In turn, this allows for more granular and thought-through insights.
Next Steps for Creating Engaged Patients
Despite the enormous potential patient engagement holds for pharma and healthcare, there is still much work to be done to make this standard practice. First and foremost, there is a need for real-world data on the benefits of patient engagement throughout a medicine lifecycle. Once there are clear metrics showing the advantages of including patients at each step, we can start develop guidelines on how to best do so.
It is also important for pharma (and especially Medical Affairs) to put themselves in their patients’ shoes, keeping the broader perspective in mind to gain insights into what is important to the patients and how various cultural, social, or lifestyle-related factors are impacting the treatment success.
Finally, ongoing collaboration between pharma, HCPs, and patient groups is critical. This can be done through involvement with PSPs, as well as through advisory boards with key patient representatives. At the end of the day, working closely with patients creates value for everyone. It helps engage and empower the patients, ultimately improving the patient health outcomes.
Coleman, D. (2018). Patient engagement in medicines R&D: The need to measure “Return on engagement”. Elevate. Retrieved from https://maps.instantmagazine.com/publications/elevate-magazine/interview-patient-engagement-in-medicines-rd-the-need-to-measure-return-on-engagement/
Coleman, D. (2018). Rebuilding Patient Trust. Elevate. Retrieved from https://maps.instantmagazine.com/publications/elevate-magazine/interview-rebuilding-patient-trust/
Holmes, L. (2015). Engage patients and profits will follow. Pharmaceutical Marketing Club of Quebec. Retrieved from: https://pmcq.qc.ca/en/past-meetings-archive/january-28-2015
Medical Affairs Professional Society. (2017). A to B to Z of Patient Centricity: What Does It Mean for Medical Affairs? (Webinar). Retrieved from https://www.medicalaffairs.org/a-to-b-to-z-of-patient-centricity-what-does-it-mean-for-medical-affairs/
Yeoman, G., Furlong, P., Seres, M., et al. (2017). Defining patient centricity with patients for patients and caregivers: a collaborative endeavour. BMJ Innovations, 3, 76-83.