The need and opportunities for Patient Support Programmes (PSPs) have never been greater than in our currently overstretched health services, where patients have struggled to access their healthcare teams and where our ‘new normal’ delivery of care will be, at least partially, remote via telemedicine.
Patient support programmes (PSPs) supplement the care patients receive from their healthcare team, delivering practical and emotional support and information, training and education to patients, empowering them to effectively self-manage their condition. Multichannel PSPs allow patients to quickly and conveniently access the information and support they need, when they need it, through services such as helplines, apps, emails and educational websites.
The value of PSPs seems obvious, but lack of awareness among patients or a lack of recognition that PSPs have something of value for patients, as well as misperceptions or concerns among healthcare professionals, remain key barriers to increased uptake.
There is no one-size-fits-all in patient support
It seems clichéd to say that patients are people who also have wide and varied values, opinions, beliefs and personal motivations, just like the rest of the population. The common experience of a shared diagnosis does not mean that their needs for support will be the same.
Effective PSPs are built on an understanding of what drives the behaviours of patients: their motivations, the coping strategies they favour and the degree to which they want and need to feel some personal control over their condition. Starting from this depth of understanding of patients as people means that their specific needs for support can be tailored, not only by unmet need (for information about treatment, for practical help accessing financial benefits, etc) but also by the way in which they need to access or receive this support.
For example, people who are proactive, who need to feel in control of what happens to them might need access to factual information, whereas people who prefer to be reactive and let things happen might need information to be actively pushed to them.
Tailoring PSPs to the individual needs of patients, who are not just patients, but also people, helps to ensure that all patients recognise there is something of value for them in PSPs and that they receive the support they need.
Gaining the trust and engagement of the healthcare team is essential
It is completely understandable that the doctors, nurses and other healthcare professionals that provide ongoing care for patients with long- term conditions will be concerned about an externally provided programme giving their patients information, education and support, over which they have no control.
Doctors have expressed concern and frustration about switching treatment for patients who need an alternative, but who are then no longer eligible for the product-specific PSP and when patients are left suddenly unsupported when a PSP is withdrawn or terminated. There also remains some suspicion of the motives of pharmaceutical companies in providing these expensive programmes.
Delivering an effective PSP that complements the care provided by the healthcare team requires a collaborative approach where the healthcare team is given the opportunity to actively engage with delivery of the PSP (helping the team to help its patients) with full visibility of all the content and support that will be offered to their patients.
A recent NHS-led survey reported that doctors do see value in some of the content offered by PSPs, although this was mostly limited to specific practical support such as injection training, administering medication in patients’ homes, product information and reminder texts/apps that prompt patients to take their medication.
This is encouraging but there is clearly some way to go to persuade doctors that PSPs can deliver the emotional and informational support their patients need on an ongoing basis.
We need to continue to demonstrate the need for and value of patient support programmes
Delivering individualised, tailored PSPs and making the healthcare team an integrated part of that delivery are essential, but we should also continue to highlight patients’ unmet needs and the effectiveness of PSPs in improving patient outcomes. We know from our research that patients have ways of seeing and understanding their condition and treatment that are often at odds with the medical model.
This limits the effectiveness of doctor-patient communication, leaving patients uncertain, anxious and with a misunderstanding of key information about their condition and treatment. PSPs can help to bridge that communication gap, empowering both patients and healthcare professionals to improve patient outcomes.
Fiona Hammond is Managing Director at Hamell Communications Ltd
