The issues surrounding patient engagement sparked lively debate at our inaugural Bio Integrates conference. In a panel discussion covering the topic in relation to clinical trials, Paul Wicks VP of PatientsLikeMe highlighted the need for a committed approach throughout, saying “it should be a science, not just a CSR strategy.” Patient group engagement consultant and former health charity CEO Eric Low agreed, adding that “trials need to be designed with consideration to what patients actually want” and voicing his concerns over the lack of trial data in this area.
Organisations like National Voices, the Coalition for Collaborative Care and PatientsLikeMe are driving a change in this narrative, however. For example, with a network of over 250,000 patients living with 2,900 conditions, PatientsLikeMe has become the largest personalised health network in the world, creating an unprecedented source of real-world evidence and opportunities for continuous learning. Their philosophy involves asking questions to learn how others manage their symptoms and discover treatments; taking charge by using smart tracking tools to better understand their health and feel empowered to make informed decisions; and sharing health experiences with others and taking part in research.
With patients feeling empowered to take ownership of their health and ask questions, it then falls to the scientific and medical community to take any concerns on board and actively involve them in trials and treatment. Recently, the Medicines and Healthcare Products Regulatory Agency (MHRA) has launched a public consultation to encourage feedback from patients, healthcare professionals, carers and patient group representatives in order to better communicate with patients and the public, acknowledging that they “recognise the need for a step-change in our approach to engaging with and involving patients in the MHRA’s work.” Balancing overall population health with ensuring a personalised experience for each patient will also be covered during panel discussions at this year’s Pharma Integrates conference in November.
So, once implemented, what are the benefits of a patient-centred approach? Evidence shows that those who are involved in decisions about their health and care tend to report greater satisfaction with the services they receive; are more likely to say that the decisions made were most appropriate for them and make fewer complaints than those who were not involved in decisions. They, therefore, make decisions that help them optimise their physical and mental health and wellbeing.
With the advent of digital devices and healthcare solutions, people are increasingly managing their lives through their smartphones. Therefore, there are opportunities to engage with patients digitally and enable them to self-manage their health using technology. If coordinated correctly, this can add value via data reporting, evaluating treatment outcomes and creating targeted treatment options. The use of technology in healthcare will also be discussed in more detail at Pharma Integrates, including the AI’s impact in healthcare, digital innovation in improving patient outcomes and using wearables to collect real world evidence. Why not join us there!
As the healthcare model evolves from a more generalised approach to something more bespoke, it makes sense for patients to feel supported and listened to, from clinical trials through to clinical care, in order to achieve the best outcomes at all stages of the process.
Want to learn more? Audio from all the roundtable discussions, breakout sessions and keynote presentations at Bio Integrates is available here.