Table 1

Values/issues identified as being most important to patients (in their own words)

1. Education and information
 Patient advocates and patient stories‘Advocates related to each disease’. (NA)
‘Educate patients through others' experience’. (NA)
‘Support for patient education and patient “ambassadors” who can assist others’. (EU)
 Helping patients manage their own health and make their own decisions‘Publish specialist (information) in conditions’. (NA)
‘Customised info/data’. (EU)
‘Support patients on treatments by providing information, insight, peer groups’. (EU)
‘Supporting people to live healthy lives and sharing resources to benefit patients’. (EU)
‘Young creative approach to awareness … Online portal for meds, lifestyle, diet, health tips’. (EU)
‘Knowing consequences to make an informed decision’. (EU)
‘Support and guidance on how I can live with my condition (it's not just the medical side that matters—it has a financial impact, impact on the family, etc)’. (EU)
‘Plain English’. (NA)
‘Plain scientific language’. (EU)
‘Patient-centred medicines leaflet developed by a Pharma company in Germany looked at what patients wanted to know, not just what the pharma medics/regulatory people had to tell them’. (EU)
 Resources for families, carers and communities‘Educate—families and communities’. (NA)
‘(Don't) ignore family/caregiver concerns’. (EU)
‘Facilitating family education’. (NA)
 Resources for healthcare professionals‘Create information that doctors can distribute’. (NA)
‘Champion the change in medical and organisational culture’. (EU)
‘Patient centricity is not being taught to medical students and therefore there's no incentive to learn how to be patient centric’. (EU)
‘Inadequate education of clinical staff and support personnel’. (NA)
 Collect patient views and provide information about side effects‘Include patient voice—side effects’. (NA)
‘Unbiased reporting of effects of treatments’. (EU)
‘What is a tolerable side effect?’ (NA)
2. Cocreation
 Work with patients and other stakeholders throughout the research, development and launch of medicines‘Open engagement with stakeholders across drug development pipeline’. (NA)
‘Clinical trial end points patient input’. (NA)
‘Shared goals and outcomes’. (EU)
‘Including the patient in research from the beginning (this will improve compliance too)’. (EU)
 Research patient's wider needs‘Recognition of quality of life beyond the medical model’. (EU)
‘Researchers talk to patients to discover unmet need from them’. (NA)
‘Understand patient journey (ideally) begins and ends at their home and not with your product or organisations’. (EU)
‘Spending time with patients and their families to understand their experience’. (EU)
 Work with patients and other stakeholders to advocate policies in the interests of patients‘Join and lobby for patient rights regarding meds (not just industry)’. (NA)
‘Encourage and support patient lobby movement’. (EU)
 Group of stakeholders to codesign solutions‘Pharmaceutical companies could develop a cross-healthcare advisory group to help “cocreate” solutions instead of just sponsorship’. (NA)
3. Access
 Support service to help patients navigate complex health systems and issues‘Create Public Service Agreements (PSAs) to educate’. (NA)
‘Have patient advisors 24/7’. (NA)
‘Access to right therapy and information to support decision-making’. (EU)
 Patient assistance programme‘Compassion programme so no one is left out’. (NA)
 Flexible pricing policy‘Make products and services affordable and have fair and honest pricing’. (NA)
4. Transparency
 Transparency with clinical trial data‘Share research findings to advance overall research’. (NA)
‘Trial results reported up to trial participants’. (NA)
‘Unbiased reporting of all trials’. (EU)
 When developing medicines, report on the measurable patient benefit and patient safety‘Create the safest and most efficacious drugs’. (USA)
 Respond to patients’ feedback—show how you have listened‘Value and respond to feedback’. (NA)
‘Good communication. Follow-up with backup’. (NA)
‘Better medium between industry and patients’. (NA)
‘Listening and learning from patients takes new ways of working/training’. (EU)
‘Longevity of relationship not just project-focused’. (EU)
 Open and accountable reporting of progress‘An annual report of AZ's patient-centred activities’. (EU)
‘Accountability from the AZ Board’. (EU)
‘Measuring (patients’) influence and impact on AZ’. (EU)
‘An action plan with measures’. (NA)
‘Accountable for actions’. (NA)
‘Socially responsible’. (NA)
 Values-based approach to business development‘Balanced and ethical value proposition between profits and patients’. (NA)
  • EU, European Union; NA, North America.