Why are patient support programs not working?

Why are patient support programs not working?

“The current standard of care is that you get diagnosed with a condition, you’re handed some treatments, you’re handed very little or next to no educational information, and you’re sent on your way. And that’s not anywhere near as good as it should be”

Seb Tucknott
CEO & Co-founder IBD Relief

Patient support programs (PSPs) exist for the sole purpose of helping patients get the best  possible outcomes for their health. By offering patients knowledge, skills and confidence, they empower them to be more actively involved in their health – which includes everything from taking medication as prescribed to having better and more productive conversations with their doctor (eg, Adams, 2010; Riggare et al., 2019).

This benefits everyone: patients, the healthcare system and pharmaceutical companies.

A programs that gives holistic patient support can help tackle what needs to be tackled: whether that’s adherence, mental health support or anything else patients need.

Based on this, you’d think that all patients would use or be part of a PSP.

But that’s not the case. So why are we failing at providing patient support?

Depending on who you ask though, the definition can vary wildly

Traditionally, more involved patient support took the form of peer-to-peer, in-person meetings, perhaps with a healthcare professional. These types of programs, which, although less common today, still exist for some conditions (think rehabilitation support program) allow patients a safe space for self-expression, social support, education about the condition, and treatment adherence. For instance, CLLSupport (a patient group for those living with chronic lymphocytic leukemia (CLL)) ran in-person events for those with CLL pre-pandemic, and these events had a huge impact on a patient’s mental health and well-being. Norah Grant, a trustee at CLLSupport who also has CLL, explains what it’s like being able to see others with CLL thriving: “When you’re in a room full of people who have the same problem, it’s so encouraging. It’s like, ‘oh my gosh, they’re not dying!’”

PSPs can also take a less-involved approach, focusing primarily on building patients’ knowledge of their condition, such as through passing out pamphlets or brochures. Although these types of PSPs are still useful
and have merit, with the current focus on technology and COVID-19 changing the healthcare landscape, many programs have progressed into new forms. For example, IBD Relief provides patient support in the
form of online social support and through providing an educational platform for those with inflammatory bowel disease (IBD). Seb Tucknott, CEO and co-founder of IBD Relief, highlights the many different types of
support needed for patients suffering from IBD: “There are lots of different things that a patient could know that could help improve their quality of life. It could be understanding about the disease: why it happens,
what’s involved, what the symptoms are like. There’s so many different treatment options, there’s about 20 different medications that you can take specifically for IBD. So again, understanding those treatments and
how you take them, the social and psychological battles with taking those treatments and around compliance.”

Even less involved is the definition of a PSP that is solely focused on giving patients information on how to take their medication, which again can take the form of a printed brochure or a more digital medium such as a website.

So it’s clear that defining what a PSP is a challenge among the stakeholders involved. In fact, according to our recent survey, most patients (70%) don’t know what a PSP is. And if they don’t know what one is, what are the chances of them using one?

Why don’t all patients use PSPs?

Access can be difficult

Patients with chronic diseases often do not know that PSPs exist for their condition. One report by the NHS Confederation highlights the key barriers
to PSP uptake, noting lack of awareness of PSPs for both patients and healthcare professionals (HCPs see below) as a key barrier. Results from the survey we ran
supports this: half the sample of patients surveyed were not aware of any existing PSPs for their condition, but would like to be part of a PSP if one existed for them.

Since PSPs are difficult to find through traditional means (eg, word of mouth), and with the pandemic making physical materials such as leaflets more obsolete, most PSPs are moving online, which could potentially tackle this challenge, at least to some extent.

IBDRelief is launching an online educational platform to address patient needs completely online. IBDmate.com is an online platform, targeted to younger patients, that, once launched, will provide useful information, real patient experiences, expert advice, as well as a medical jargon dictionary, to name a few features.

“Webinars reach far more people than we can reach at a conference”

Likewise, CLLSupport have moved their events online due to COVID-19, providing webinars and even launching an online mindfulness program (all aimed at their older demographic). As CLLSupport trustee Brian Gardom explains, “Webinars reach far more people than we can reach at a conference… We video them and put them on the website, which allows people to watch the whole thing again, if they miss something and they can freeze frame a chart or whatever, and look at it.” Their new mindfulness program, CLLSupportAct, has also been widely successful at reaching those who are part of CLLSupport. But how do we reach the people with CLL who don’t search online? “We have about 3,300 members and there are roughly 30,000, maybe 32,000 people with CLL in the UK. So we have about roughly 10% of that. And one of our priorities is to try and reach the other 90%.”

While these initiatives highlight the great strides PSPs have taken to be accessible and useful online, the reality is, when looking up a condition online, the patient will be presented with an overwhelming amount of information from numerous different sources. Not all these sources are credible, and the helpful PSP they are looking for might not come up right away. This issue is doubly difficult for the older population of patients, who may have low computer literacy. Trying to find information online is not the most straightforward way of finding out about PSPs.

Healthcare professionals don’t always see the value

If finding PSPs through physical and online means is difficult, then how do patients usually find a PSP for their condition? In our survey, we found that patients who have been part of a PSP reported that they found out about it through recommendation of their HCP. The problem is, HCPs don’t always let their patients know about existing PSPs for their condition. As Tucknott explains, “The healthcare industry doesn’t really yet see the value of knowledge and education. Even when I’m talking to people about what we’re doing, quite often the first response from even, for example, a specialist nurse, is ‘why do we need that? We’ve already got leaflet X’. They see what they have as enough.”

“The healthcare industry doesn’t really yet see the value of knowledge and education”
Seb Tucknott

Gardom had a similar experience: “We used to send these informational booklets to the clinics… I go to one of the clinics regularly and there are never any booklets there. The last time I went, I inquired behind the desk and it turns out they’ve been under the desk for two, three months. And I say, well, have you not thought of handing them out? They replied, ‘I put them there because we’re too busy to put them out.’”

We also spoke to patient engagement leads in pharmaceutical companies and they agree: HCPs are considered the ‘gatekeepers’ of PSP information. As pharmaceutical companies are not allowed to reach out directly to patients, the information has to come from HCPs. If the HCP doesn’t tell the patient that these resources exist, chances are patients will never find them. Improving knowledge about PSPs, for example around how they are regulated, could mean HCPs are more willing to recommend them. Additionally, more evidence around the benefits of PSPs, including self-reported benefits from patients, and research evidence showing that PSPs reduce healthcare costs would help with HCP uptake.

Not all patients want to participate

While some patients want to learn everything they can about their condition and be in control of their health, this isn’t always the case.

“ Doc, make me better, I don’t want to know anything else, just make me better”

Gardom knows this problem all too well: “There is a huge number of people with CLL who just don’t want to know. There are two broad types of patients: one, ‘doctor tell me everything, I need to know everything, and I’m going to ask you a lot of questions, please answer them.’ The other type is ‘doc, make me better, I don’t want to know anything else, just make me better’… And I suspect a lot of those people we aren’t engaging are that second type”. These patients who prefer not to participate in their healthcare decisions are less likely to seek out information about their condition; importantly, research shows that these less active patients also tend to have worse health outcomes (e.g., Clayment et al., 2016).

Knowing these barriers can help us develop solutions to make PSPs more useful and available to the patients who need them.

What can be done to make it right?


In talking with people who develop and initiate PSPs in pharmaceutical companies, it was clear that co-creating solutions with target patients is key to making a PSP as useful as possible. To develop solutions that will actually give patients what they need, it is essential to get their input and feedback. Involving patients in the solution also helps to encourage patients to take an active role in their healthcare: patients will become more activated and want to be more educated and involved. By involving patients in the solution, not only will the program be more useful to them, but it also helps pharmaceutical companies achieve the outcomes they would like to see.

Be inventive

The reality is, while some HCPs do not see the value of PSPs, even the ones who do will probably be unaware of PSPs relevant to each chronic condition. HCPs
are stretched thin and don’t get enough time with their patients: there are so many medications and programs HCPs need to be aware of and it’s not feasible for them to know this information off-hand to be able to give patients the information they need. We need to work with HCPs and patient groups to develop solutions that can help ensure that PSPs are offered to patients. This might include facilitating open conversations among members of patient organizations and HCPs about the PSPs and resources available for certain chronic conditions. Without
HCPs being involved, it will continue to be difficult for pharmaceutical companies and patient organizations to disseminate their PSPs.

Align to common goals

It may be counterintuitive, but HCPs and patients (and pharmaceutical companies) often have different priorities. Although the goal of improving the health outcomes of the patient is one shared by all parties, the steps to reach this goal differ between patient and HCP perspectives. For example, while HCPs are found to prioritize medication adherence and the lowering of healthcare costs, our survey found that patients do not prioritize these outcomes, but instead prioritize managing their symptoms and gaining knowledge of their condition.

Interestingly, all of these outcomes are addressed when patients enroll in a PSP (Ganguli et al., 2016). If PSPs are only framed for what patient’s value, then HCPs may not see the value of PSPs. But this is also true in reverse: patients may not enrol in PSPs if they believe the only benefit to them is medication adherence. PSPs must be directed to both parties with the goals that each party prioritizes at the forefront.

What can be done to improve success?

PSPs, whether online or in-person, have the potential to positively change the healthcare journey of patients with chronic diseases. As a healthcare consultancy that puts emphasis on the patient perspective, we aim to investigate both sides of the story: focusing on the patient experience while also gathering insight into the HCP perspective. In this way, we are able to carry out a comprehensive behavioral analysis where we can fully understand what the needs of patients and HCPs are. We can then design an intervention plan and co-create with the community to land on an optimal solution.

Patient organizations and pharmaceutical companies have similar goals when it comes to addressing the needs of patients. Using PSPs we can activate patients to be more in charge of their health, and we can encourage patients through providing education, resources, and social support. But these initiatives are not feasible without the help and support of HCPs.

Get in touch with us if you’re interested in learning more about how to design a PSP that will resonate and truly improve health outcomes.

“I think there is a momentum now in terms of patient centricity and understanding patients, which is encouraging, but it’s still, in my opinion, perceived as ‘it’s the right thing to do.’ And I think we need to shift that further and say, ‘not only is it the right thing to do, it’s the most important thing to do.’ It’s a critical thing for driving innovation and improving outcomes. And we’re not quite there yet”
Seb Tucknott