On 27 November 2018, members of the Oxford PharmaGenesis Patient Engagement Team were delighted to attend the annual Pharmaceutical Marketing Society meeting in London to discuss with industry, healthcare and patient organization stakeholders what a more informed patient means for healthcare.
Deborah Wyatt from talkhealth, Nikki Kendrick from Spirit Global and Tim Ringrose from Cognitant presented the results of two different surveys of patient and clinician attitudes to patient information. These were collaborative initiatives run by the PEIG (patient experience and involvement group) network across different platforms; the clinician survey was run by the M3 Group and the patient survey was carried out by talkhealth. The presentation format highlighted the interesting differences in findings between the two studies. Most patients surveyed by talkhealth and Spirit Global accessed health information regularly (weekly or daily), whereas the doctors surveyed by the Cognitant study estimated that only one-third of patients had researched their symptoms before their appointments.
When it came to sources of information, doctors thought that patients relied too heavily on ‘Dr Google’; however, patients stated that they tended to prefer information from accredited sites such as the NHS website and disease-specific charity websites. Only 6% of patients surveyed said that they preferred to receive information in leaflet form compared with 36% who stated that a website was their preferred information source. However, 38% of doctors reported giving newly diagnosed patients a printed leaflet and 19% provided a printed webpage or a list of online resources.
Two case studies of successful patient engagement projects were discussed at the meeting. Vivienne Beckett (Sanofi Genzyme Rare Diseases, UK) worked with parents and carers to create an information pack for infantile-onset Pompe disease. The aim of this pack was to help parents to develop an education, health and care plan together with their child’s school. Rather than providing one booklet that covered all topics, individual leaflets were created that were tailored to parents, schools and other stakeholders on specific topics, such as background information on the disease, school requirements and benefit entitlement. These leaflets could be adapted depending on the requirements of each information pack user.
The second case study was introduced by Pam Green from the NHS North East Essex Clinical Commissioning Group who described how a pharma-funded programme in the area enabled patients with chronic obstructive pulmonary disease (COPD) to have a 45-minute appointment with a specialist COPD nurse to learn how to manage the condition more successfully. This initiative reduced inappropriate accident and emergency admissions and provided local practice nurses with the specialist training required to continue helping their patients after the end of the programme.
Sarah Pullen, author of A Mighty Boy (Unbound, 2017), described the implications of a lack of easily accessible, comprehensive information when her son Silas was diagnosed with a brain tumour. She described how she had to collate information from multiple sources, which took time away from being with her family. The Brain Tumour Charity are working with Sarah and other stakeholders to launch BRIAN (the brain tumour information and analysis network), which is a databank for patients with brain tumours to add real-time information about their experiences. The anonymized information will then be available to others who have signed up to the databank.
Denise Silber of Doctors 2.0 & You described how patient engagement in some form has been ongoing since the 1960s. However, the doctors surveyed expressed concerns that an informed patient is often a more demanding patient. Nevertheless, attendees at the conference believed that informed patients have improved health outcomes compared with less well-informed patients. To ensure that all patients are informed, the General Medical Council (GMC) ruled in 2009 that clinicians should include patients in their decision-making processes. However, more initiatives are still required to provide information that is specifically tailored to patients and that focuses on the aspects that are most important to them, thus allowing more constructive consultations between patients and doctors.
“You see what we can do when we work together?”
Silas Pullen, aged 10 years, a patient with a brain tumour