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Blog: Not just another PSP: 5 top tips for evaluating your patient support programme

Claire Fradet Aubignat, June 2020

Did you know that, whilst there are a significant number of PSPs available to patients, only a small minority are actually used?  IMS (2015) found that 36 out of almost 200,000 mobile health apps comprised 50% of downloads - many of the rest must have very few users. So, a key challenge is to develop a PSP that is utilised, valued and has a definite real world impact on both the patient and HCP experience.

Hand with five fingers held up
Hand with five fingers held up

Did you know that, whilst there are a significant number of PSPs available to patients, only a small minority are actually used?  IMS (2015) found that 36 out of almost 200,000 mobile health apps comprised 50% of downloads - many of the rest must have very few users. So, a key challenge is to develop a PSP that is utilised, valued and has a definite real world impact on both the patient and HCP experience.

Patient support programmes (PSPs) meet a range of needs, from helping patients manage their disease through lifestyle advice and disease education, to helping with adherence to medication, and providing support with finances and reimbursement. All have one goal in mind – to improve the patient journey, and ultimately patient outcomes. Doing so helps pharma cement brand leadership in a therapy area.

Evaluating the PSP before launch is critical. We present you with our top tips for conducting successful PSP market research to ensure your PSP is successful and maximises value to your customers. 

1. Make the most of patient insights
 
Patients and their unmet needs should form the cornerstone of any PSP design, so you need to start with strong patient insights. A good PSP takes into account not only the illness or the medication, but also the characteristics of the patients who are living with the illness and using the medication.
 
For example, a 22-year-old urban student will have very different needs for managing their asthma to a retired 75-year-old asthma patient who also suffers from hypertension. One might be looking for a mobile app to support their disease management, whereas the other may welcome a helpline or a face-to-face support group.
 
One size does not fit all when it comes to PSPs; personalised offerings are key. When undertaking patient research, we recommend you consider the variability in your target audience and implement a carefully considered sampling plan to ensure  the findings enable you to tailor services to individual patients.
 
In the analysis, look at the language used by patients when talking about their disease and treatment. Then you can ensure communications about your PSP reflect the language and tone that patients use, and your messages will resonate better.
 
A recent piece of research we conducted with diabetes patients revealed that positive language focused around building confidence, gaining control and improving their condition was favoured over   lifestyle advice, regarded as patronizing. We also learnt that  patients welcome support materials employing simple language, as opposed to the more complex terminology used by doctors during consultations.
 
Patient research provides an opportunity to benchmark against competitor offerings, enabling you to understand what currently works well, what is missing and what could be improved. Understanding patients’ awareness, usage and perceptions of competitor support services and the value they bring is a good way to understand best practices to take forwards, and the pitfalls to avoid.
 
2. Complement the patient perspective
 
Whilst patients are an obvious target for PSP market research, other stakeholders, including those who at first sight appear to have less direct or obvious involvement with support programmes, are valuable for understanding where the ‘pain points’ exist in the patient journey, and where the opportunities lie to provide better patient support.
 
Caregivers are often overlooked, and yet they can be heavily involved in patient care. They may handle appointments and medication schedules, especially for paediatric and elderly patients, or those with debilitating diseases. They’re also the person closest to the patient, their disease and its management. From our experience, caregivers are a vital stakeholder to include, not just to better understand patient, but also to understand their own needs. One of the key findings from a recent study we conducted in the area of mental health was the lack of emotional support available for caregivers. Helping caregivers to help the patient would have a real impact, including on adherence. With this learning, we were able to advise our client of a great way to differentiate in the market.
 
Patient Advocacy Groups (PAGs) and Patient Associations are another key stakeholder.. These organisations have in-depth insight into the lives of patients living with specific illnesses, including the day-to-day challenges patients face. They are often extremely influential, particularly amongst engaged patients, providing precious information about new treatments and services that could make a difference to their lives.
 
Patient organisations are especially valuable for rare and very serious diseases, where finding patients for participation in market research can be a challenge, as they can be included as part of the research sample, and consulted to support with patient recruitment.
 
Research with patient organisations provides an opportunity to understand what support they  themselves are offering to patients. In a recent piece of research we conducted within haematology, we found that patient charities / organisations were extremely active in many markets. Consequently, we recommended that in order to maximise uptake, our client should consider working with them in sponsorship or partnership.
  
3. Get HCP buy-in
 
Physicians are one of the first points of entry for PSPs – they act as gatekeepers, informing patients about any available services to support their disease management. ‘What’s in it for them?’ is a good question to bear in mind when developing your PSP and considering targets for your PSP research. A multi-faceted research approach ensures that all influential stakeholder perspectives are understood.
 
Understanding the needs and priorities of HCPs to gain their buy-in could be a promising strategy. For example, whilst physicians might say that PSPs only represent a ‘secondary driver’ in brand choice, a PSP that saves them time has the potential to influence prescribing choice.
 
It’s also a good idea to understand HCP concerns such as loss of control over patient management, patient data privacy, and fear of 3rd party information being provided to patients. If known, objections could be handled better by pharma companies from the outset..
 
Depending on the market, nurses and pharmacists may also have a role in the enrolment and fulfilment stages and their buy-in could be needed  for the PSP to be successfully implemented. As such, they should be considered as valuable targets for research. Payers, meanwhile, can provide a broader perspective into PSPs, and depending on the nature of the support programme, can be influencers or key decision makers at the hospital or administrative level.
We recently conducted a 3-phase study in COPD, initially with a small number of individual patient and caregiver interviews to understand current support mechanisms, needs and priorities. Focus groups with patients and caregivers followed, whereby patients were able to share their experiences and debate new ideas and channels for a PSP. Potential PSP outputs from these groups were then tested with physicians and nurses. This iterative approach gave our client a 360-degree understanding of the market, enabling them to develop a  PSP that took all stakeholders into account.
 
4. Opt for a customer-led, needs-based approach
 
Though it might be tempting to go into PSP market research with a number of hypotheses on what your PSP should entail, starting with a blank canvas will be more efficient in unearthing genuine unmet needs.
 
At Research Partnership, we frequently ask stakeholders to describe each step of the disease journey, from pre-diagnosis through to ongoing management of the disease, with detailed probing and laddering used to gain a deep understanding of experiences and pain points at each stage of the journey.
 
When discussing unmet needs, respondents are encouraged to consider all angles – educational, emotional, financial, and logistical. Taking the time to ensure that what might seem like a mundane practical consideration isn’t overlooked can often lead to rewards. For example, in one study we identified that hospital parking fees were an important pain point for parents of paediatric oncology children across a diverse range of markets. Addressing this issue could make a true difference to the patient experience.
 
5. Take an ethnographic approach
 
A truly successful PSP is one that is capable of supporting the patient day-to-day through their most challenging periods of need, such as when they do not have their HCP to turn to. For example, this could be during phases of maintenance post-chemotherapy, when patients are most scared of potential infections after a long hospital stay. Designing market research to understand the needs outside of the main ‘touchpoints’ of the patient & HCP interaction will help to create value in your PSP, enabling better patient self-management and driving improved outcomes, which both patients and HCPs will appreciate.
 
To address this, we use ‘ethno’ pre-tasks in our market research studies. Using app-based diaries to capture patient attitudes, mind-sets and behaviours between appointments, we’re able to collect photos, videos and written feedback on patients’ experiences living with their condition. This provides rich insights into the ‘real world’ impact of living with the disease and generates prized multimedia outputs.

During interviews, we use outcomes-based techniques and questioning. At the end of the day, the PSP should improve patient outcomes and it’s important to first understand the desired outcomes that different stakeholders want to be able to achieve and identify the gaps where patient support initiatives can help.
 
These are our top tips to enhance your PSP programme.
 
At Research Partnership, we have developed a comprehensive approach to help pharma companies optimise their PSP. We call it PSP Enhance and it covers initial design, development and optimisation (including UX testing) and launch monitoring to optimise the success of your PSP programme. Please contact us for further information.

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