Looking to the future of patient empowerment
Patients, or should we say people, with conditions such as asthma, rheumatoid arthritis and lupus have never had as much access to medical information as they do today.
But the question is, are they getting the right information? In the light of complex care pathways and heterogeneous disease aetiologies, it is important not only to link the right person to the right medication, but also to the best evidence to empower the patient’s own ‘personalised’ health journey.
Prior to COVID-19, digital health was a relatively new term, but the worldwide pandemic shone a light on personal care, highlighting the potential for mobile health (mHealth) and patient support programmes (PSPs) to the masses. Regardless of the healthcare environment, millions of people with chronic health conditions are already seeking answers, support and solutions that are best for their individual needs.
So what are PSPs? This is an umbrella term applied to initiatives generally led by pharmaceutical companies to ‘improve access and adherence to prescription drugs’ (IQVIA white paper, 2021) or a system of collecting data on information relating to drug products (ABPI, 2018).
PSPs generally encompass:
- Training about effective administration of medicines
- Helping people understand their condition and advice on disease management
- Financial assistance, via a digital platform.
As a healthtech agency with a passion for making science personal, VISFO has long had an interest in personalised healthcare.
We began our own research several years ago, looking at the information that was available to people living with lupus and what kind of support they needed, putting the person at the centre of our research.
As part of our literature research into lupus, a review by Dantas et al. (2020), stated that available mHealth options were rated to be of poor quality and limited functionality. Additionally, PSPs, while available, had low uptake due to concerns about privacy and where the data was going.
Through our research, we have also noted an evolution in digital PSPs to include more diverse offerings, for example:
- Tracking tools and medication reminders
- Appointment reminders and discussion guides
- Access to telephone hotlines, including out-of-hours access to healthcare professionals
- Community support forums.
It’s important to stress the need for flexibility and personalisation in PSPs. A ‘one-size-fits-all’ approach will not guarantee the best outcomes for patients or for diverse communities. This appreciation that patient cohorts are actually a group of individuals, with unique experiences and needs, who suffer from the same condition, is now increasingly being recognised in patient- reported outcomes (PROMs). A great example of this is the mother-generated index (MGI) tool for prepartum women. In this quality of life tool, women due to give birth are asked beforehand which things matter most to them, not as expectant mothers, but as individuals. The MGI then measures how each facet of life, deemed of value to each woman, was affected by the birthing process, thus providing a more holistic means of how conditions impact patients’ lives, not just their bodies and clinical markers.
Beyond the pill
If designed correctly, with patient needs in mind, PSPs have every chance of succeeding. We need to remember that people must receive more than they put in for PSPs to truly add value. This is not limited to simple financial assistance within PSPs, but also:
- Training about effective administration of medicines
- Helping people understand their condition and advice on disease management
- Tracking tools and medication reminders
- Appointment reminders and discussion guides
- Access to telephone hotlines, including out-of-hours access to healthcare professionals
- Community support forums.
Offering remote support where possible and helping to ensure they are treated closer to home is the future for PSPs. COVID-19 normalised digital health. Without appointments at GP surgeries and hospitals, people had the opportunity to experience digital health for themselves, weighing up the pros and cons of digital vs face to face, enabling them to make an informed choice about which approach works best for them.
The worst thing pharma can do is assume what people want. People are not just patients, they are people with real life experience. They live with conditions day- to-day and are able to provide the detail of what is needed in terms of patient support.
