Blockbuster drug of the 21st century
16.12.13
Last week I attended the impressive WISH conference in Doha. WISH, World Innovation Summit in Health, is chaired by Lord Darzi, former UK health minister (one of the best, I hear from UK colleagues) and funded by the Qatari Foundation.
At the session on patient engagement panelists explored the four types of strategies by policy makers and providers: health literacy, shared clinical decision-making, self management and patient safety programs.
On health information, the panel discussed how to provide the right level of information. We have moved very quickly from a single opinion, to adding a second opinion. Now patients face millions of opinions on the internet. And adding the complexity of genomics and epigenetics makes it even harder to pick out the information relevant for me. All this information, and the connectivity between people, will for sure lead to disruptive innovation. And we already see it happening.
The pre-conference report on patient and family engagement includes several useful case studies for inspiration. Let me highlight a few:
LEAD, from the National Breast Cancer Coalition: more than 2000 breast cancer patients and family members, in over 40 countries, have been graduated and can now serve on research ethics committees and as patient representatives on hospital board. They can also help interpret science, and secondary reuse of data.
DIPex, a foundation in the UK, has created a database with vetted video clips where patients and caregivers share practical experience.
How can biopharmaceutical companies contribute? We can do a lot more to involve patients in medicines development and evaluation. We have added several projects that engage patients in research to the Innovative Medicines Initiative (IMI), a joint undertaking between EFPIA and the EU that fosters collaborative research bringing together industry, academia, SMEs, and more.
The U-BIOPRED project addresses knowledge gaps surrounding severe asthma and is benefiting from the active involvement of patients, who are reporting outcomes to contribute to the U-BIOPRED data pool. The EUPATI project meanwhile is facilitating patient involvement in R&D to collaborate in academic research, industry research, authorities and ethics committees. Yet another IMI initiative, PRO-active, is using patient reported outcomes to further knowledge about COPD, chronic obstructive pulmonary lung disease.
Companies are more and more often consulting patient groups when designing clinical trials and measurements for patient-reported outcome. And when setting up and monitoring registries that collect data after approval in the work on assessing benefit/risk. Similarly, the European Medicines Agencies held a workshop recently on the involvement of patients in their work. This has already resulted in regulators and companies changing their minds on what results and endpoints are meaningful to patients.”
The industry has committed to develop patient-language summaries to participants in clinical trials, and we would like to go further on information to patients for approved medicines. With new technology we should be able to tailor the package leaflets to each patient (what information is relevant and not). By the way, why do the leaflets need to be in the pack? It should be on the web, or as an App.
And I must finish with my favourite example, from my home country Sweden, on how biopharmaceutical companies can help: the website provides product information to millions of Swedes every month. Unfortunately, we are forbidden to do the same in most European countries.
Many people have to move, many attitudes have to change, and some rules be updated, to go from lip-service to real service to patients.
