Unlocking the potential of patient support programs to yield better outcomes
Data-driven personalization, stakeholder engagement, and empathetic understanding of patient experiences are needed to optimize outcomes and improve healthcare journeys
Patient journeys can be strenuous and complicated. Patient support programs (PSPs) are intended to help patients and their families on these journeys best handle an illness, simplify burdens, and eliminate barriers to successful treatment.
While there are large amounts of data that can be collected to support the development of PSPs, care must be taken that the patients in these programs have a positive experience – one that is of value to them, their families, and their care givers.
PSPs can make the difference in helping patients achieve positive health outcomes, whether by providing educational resources or emotional support. As health care becomes more personalized, the focus will increase on whether PSPs are achieving their goals.
“We know that there are large amounts of data that can be collected directly from patients -- whether they be patient reported outcomes, symptoms, or any information that's provided at a clinic visit, and also externally, for example, claims data,” says Esther Kim, ScD, Senior Director, Global Oncology Innovation in Care, Lead, at AstraZeneca.
A holistic picture
“But the key is to ensure that we are aggregating this data so that we have a holistic picture of the patient, and most importantly, to think through how we can gain direct insight from the patients as well as their care givers, to ensure that we are directing the right types of communication, and the right type of engagement at the right place. We must be sure that we have the most effective engagement for the patient,” she adds.
“One thing that always resonates with me is that we're talking about patients living with disease. But it’s never just about that patient's diagnosis. It's their family's diagnosis. It's not just about the patient's perspective, but those who surround that patient and that circle of care that we have to be thinking about,” says Rohita Sharma, PhD., Global Senior Director, Leap Lead, Patient Insights and Solutions, Medical Affairs, at Alexion Pharmaceuticals.
“We’ve been focused on understanding at a deep level what is going on in patients’ lives. We have a lot of data to look at, but what does that mean at an individualized level? We all know that we experience care in different ways, and I think we can bucket that into different cohorts. But if you’re able to marry those disparate data sets together and look at that individualized journey, you can start to understand more what they're (the patients) going through,” says Desiree Priestley, Executive Director, Patient Experience and Support, at Otsuka.
“The data and insights together can really tell a more holistic story, which helps us develop programs at scale. “It’s around the aggregate data. We have to understand what people are going through. Getting to the right patient at the right time with the right intervention via the right channel – that’s what we aspire to do,” she notes.
Priestley says that understanding all of the different touch points patients might have, their bills and finances, and the different programs they may be involved in, and coupling that information with other sets of data, like claims data, can really help providers better understand what individuals are experiencing.
“Every patient is unique in their experience, and that patient's lived experience is what we need to more deeply understand,” adds Sharma.
“With a rare disease, the whole family is impacted and involved in the whole (care) process. When it comes to working situations, some people have to give up work and other tasks in order to become the care givers. Very often it is the people in the house who also serve as care givers. So it takes a family to mitigate the situation, overcome the issue, and give care,” says Ashok Bhaseen, President of the Thyroid Federation International.
Key issues
Key issues to understand, according to Bhaseen, include comprehending the disease not only from the patient’s perspective, but also from the perspective of the care givers, and understanding the issues and challenges that the patients and care givers have, including financial and reimbursement concerns.
Bhaseen adds that even with technology, viewing issues from a patient’s perspective is key. Patients may have issues, such as being legally blind, which makes traditional ways of contacting them impractical, he indicates. And keep explanations in simple language, he notes.
The challenge with PSPs is that while the programs are often designed for the masses, they also have to be personalized for certain people, such as those with disabilities. When there are attempts made to engage with patients, Priestley says to be aware of patients who have disabilities. “There are patients that may have a visual impairment where they need auditory things explained to them. We have to be cognizant that there are people who have some sort of disability or preference, and we have to cater to all those.”
Partnerships
Partnerships are very important, Sharma indicates. She questions how to effectively engage with patients, patient advocacy groups, care givers, and others. And then there’s multichannel engagement, which can help PSPs meet patients where they are physically, and how they want to communicate.
Digitization helpful with engagement
Kim believes that digitization and artificial intelligence (AI) have helped with the personalization of medicine. She says that remote patient monitoring and chat boxes, for example, have made it possible to break down health care walls and better reach and engage with patients. It’s also helpful to develop more equitable approaches, ensuring that any contact made with a patient is culturally appropriate and competent, and available in multiple languages, she notes.
To further the efficiency and benefits of PSPs, Sharma indicates that materials related to a person’s health condition should be patient- and care giver-friendly. For her, patients should be able to understand, perceive, and digest information in a way that enables them to be a part of their care plan.
Early patient engagement
It is really helpful to engage patients when first designing and developing PSPs, Bhaseen says. “If you don't engage patient groups before putting their programs together, and they are not part of this effort, you may not get the full benefit of (a PSP) either for the patients or for yourself,” he adds. For example, if a husband or wife has a thyroid problem, the wife will have difficulty becoming pregnant. But the couple may not know this, and a PSP could benefit them, he explains.
Bhaseen continues, “In patient support programs, I think it's essential to engage the patients so they know the complexities that they may face, and we learn the things they are looking for in a support program. It’s pertinent that you engage them right from the beginning rather than make programs without their involvement.”
Demonstrating value
Kim believes that the value of PSPs can be demonstrated by both quantitative and qualitative analyses. “The numbers speak for themselves as we track who's actually using the programs, and what the engagements look like. But we also appreciate and, as appropriate, collect qualitative data as well, gaining insight from the patient as to what worked,” she says.
Over the next few years, Kim hopes to focus more around shared decision making, seeing when and how conversations occur between clinicians and patients digitally or in person, determining whether they are effective, and whether materials should be available in a digital or paper format for specific encounters.
Various efforts aimed at gathering value information on PSPs include undertaking surveys, interviews with key external experts who can offer insights, using medical science liaisons that communicate with peers and health systems, and undertaking direct engagement with health systems to determine if a program is successful, or how it can be improved to be successful, according to Kim.
Understanding patient journeys
Priestley concurs with Kim that quantitative and qualitative analyses are important components of a PSP evaluation. But also she emphasizes, “First and foremost, the design of a patient support program comes from deeply understanding patient journeys. It is beneficial if you can get down to the individual level. Going across the journey, you want to make sure that you understand where the opportunities are to either streamline processes or to address true issues that are happening across the journey.
“We have a commitment that we want to make sure that we are addressing real problems. I can't just sit here in Princeton (NJ) and think that I'm going to design a perfect program. I have to actually go to patients and care partners, talk to them, understand their journey, and solve for real problems and issues that are coming up. That is a mix of qualitative and quantitative,” Priestley explains.
The pulse of patients
Priestley says that becoming aware of qualitative issues happening across the patient journey will require talking to patients, doing surveys to garner feedback, and holding discussions with HCPs. “It is really individualized based on whether it's the pharma product that is part of this journey, the different intricacies with the product, issues about insurance coverage, or the patient experience. While we’re talking about internal value within the organization, I think there's a marriage between the internal and external value in the patient experience. I think we've adopted more of a mindset of continuous improvement, always iterating, always making sure that we're keeping a pulse on what's going on,” she adds.
Kim explains, “It’s not a one size fits all; it's individual for each patient. It's also a very different experience whether you're a patient in the US, a patient in the UK, or elsewhere. So we must ensure that we continue to make adjustments that are appropriate.”
However, Priestley believes it can be challenging for health care providers to provide effective feedback on PSPs because they may be dealing with several patients representing numerous disease states and different PSPs. “It’s our responsibility as a patient support program or leader to meet patients where they are so we can get them information directly. There are times when KPIs (key performance indicators) or staff can't give them that information. We have to think how to involve the KPIs appropriately, but then also meet patients where they are,” she says.
Priestley brings up the example of a patient who has a rare disease, which may not be the type of patient that physicians usually see. Then the processes that are associated with access to the drug product involved are probably foreign to both the physician and the patient. PSPs could help by explaining issues in very simple terms to patients, and offering the patients opportunities to directly liaise with the manufacturers of the drug.
Giving a voice to the patient, Kim believes, is important when addressing the barriers that patients experience on their health journeys, including those mentioned by patient advocacy groups and the patients themselves. But the key for Priestley is to try to solve one problem at a time, and to do so thoroughly.
Closing the gap
Physicians and patients may not always have the time to have conversations. “Closing that gap of care becomes critical in ensuring that the patient support program is creating the time and space for patient conversations to happen with the physician. And then additional conversations are going to happen with patients in the programs themselves,” adds Sharma.
Bhaseen indicates drug companies could facilitate more effective communications between physicians and patients by helping to prepare patients with the appropriate questions for their physicians.
“If you really want to create a meaningful patient support program, one that's going to be valued by patients, care givers, and the health care systems that we are all part of, then ask yourself, ‘Do I deeply, empathetically, and fundamentally understand the patient's lived experience of their disease and of their health care journey?’ That’s how you can unlock the value of patient support programs, and uncover those needs -- looking from the lens of that patient that you are ultimately trying to serve and ultimately improving patient outcomes,” says Sharma.