Observing Patients Online: the changing face of research
For years, patients have shouted to be heard. But as online patient communities, chat rooms and forums have gained popularity—and political clout—their voices are resonating.
Now being used to paint real-world pictures of patient drug use, data from online patient communities can no longer be ignored or dismissed. “The history of medicine is that in many respects patients have been left out of the conversation,” says Brian Loew, president of inspire.com. “I think patient communities are a real opportunity to fix that.”
Already, data from online patient communities are being used to deepen understanding of the patient journey through illness, thus improving compliance, informing patient-centred endpoints for clinical trials and influencing reimbursement decisions. Such pools of patients are also being deployed to conduct direct-to-patient clinical research, where patients are recruited and monitored online, thus eliminating the need for clinical sites and investigators. In the face of payer skepticism, however, the question is how fast will it scale up?
Scope
In Observing Patients Online: the changing face of research, FirstWord investigates the role online patient communities can play in observational research to enhance knowledge of how drugs are taken in the real world. Based on expert interviews, research and studies, the report examines how the means to recruit patients online and track their experience via patient-reported outcome questionnaires and sensors in real-time has the potential to transform how observational studies are conducted.
Highlights
“We see a shift wherein patients are not just taking part in their care, but defining it. Patients make decisions about managing their disease, defining their quality of life and deciding how their dollars are spent.”
– Brian Loew, President of inspire.com
“The challenge for the pharma industry is to identify the most effective means of communicating patients’ perception of treatment benefits to the different stakeholders in a changing technological climate.”
– Mike Baldwin, Health Outcomes Manager at Novartis, UK
“At present, around 99 percent of all trials are still recruited via clinician sites. The idea of doing research directly with patients is definitely an emerging innovation. It has been piloted and now the question is how fast it will scale.”
– Elisa Cascade, Vice President of Mediguard
Expert Views
Now being used to paint real-world pictures of patient drug use, data from online patient communities can no longer be ignored or dismissed. “The history of medicine is that in many respects patients have been left out of the conversation,” says Brian Loew, president of inspire.com. “I think patient communities are a real opportunity to fix that.”
Already, data from online patient communities are being used to deepen understanding of the patient journey through illness, thus improving compliance, informing patient-centred endpoints for clinical trials and influencing reimbursement decisions. Such pools of patients are also being deployed to conduct direct-to-patient clinical research, where patients are recruited and monitored online, thus eliminating the need for clinical sites and investigators. In the face of payer skepticism, however, the question is how fast will it scale up?
Scope
In Observing Patients Online: the changing face of research, FirstWord investigates the role online patient communities can play in observational research to enhance knowledge of how drugs are taken in the real world. Based on expert interviews, research and studies, the report examines how the means to recruit patients online and track their experience via patient-reported outcome questionnaires and sensors in real-time has the potential to transform how observational studies are conducted.
Highlights
- Who takes the lead in commissioning observational research
- Typical studies being commissioned online
- How healthcare tracking is going mainstream
- Case study of UCB’s partnership with PatientsLikeMe
- Benefits of crowdsourcing: is it the new serendipity?
- The drivers of online observational research
- Overview of how online patient communities are transforming observational research
- Access to expert opinion from key leaders in the industry
- Discussion of conventional versus direct-to-patient trials
- What role do online patient forums have to play in observational research?
- How is pharma research using patient communities?
- What position do payers take?
- How can data mined from online sources increase the authenticity of a drug’s value?
- What role, if any, does self-tracking have in observational research?
- E-business/Emerging Technology Directors
- Clinical Research and Trials Directors
- Heads of Communications/PR
- Market Access Directors/Managers
- Marketing Research/Business Intelligence Managers
“We see a shift wherein patients are not just taking part in their care, but defining it. Patients make decisions about managing their disease, defining their quality of life and deciding how their dollars are spent.”
– Brian Loew, President of inspire.com
“The challenge for the pharma industry is to identify the most effective means of communicating patients’ perception of treatment benefits to the different stakeholders in a changing technological climate.”
– Mike Baldwin, Health Outcomes Manager at Novartis, UK
“At present, around 99 percent of all trials are still recruited via clinician sites. The idea of doing research directly with patients is definitely an emerging innovation. It has been piloted and now the question is how fast it will scale.”
– Elisa Cascade, Vice President of Mediguard
Expert Views
- Brian Loew, President, Inspire.com
- Keiron Sparrowhawk, Partner, PriceSpective
- Sue Curron, Vice President and Senior Global Project Leader, Patient Solutions, UCB
- Elisa Cascade, MediGuard
- Jeremy Shane, President, HealthCentral.com
- April Foreman, Psychiatrist
- Ben Heywood, Co-founder and President, Patientslikeme.com
- Paul Wicks, R&D Director, Patientslikeme.com
EXECUTIVE SUMMARY
INTRODUCTION
Hierarchies of evidence
Changing technological climate
AN INTERCONNECTED WORLD
Recruitment online
Double-edged nature of engagement
PATIENT REGISTRIES
Product registries
Disease or condition registries
Strengths and weaknesses
Commercial registries
Ethical considerations
Commissioning online observational research
Departments involved
Projects commissioned
PATIENT-REPORTED OUTCOME MEASURES
Greater regulatory acceptance
More talk than action
Tracking healthcare
Tracking takes off in the UK
Blood pressure guidelines revised
New kinds of research
PROMs via text
More efficient healthcare delivery
Better compliance
Growing self-tracking community
Tracking for public health
Changes in asthma management
Data donorship
ONLINE PATIENT COMMUNITIES
More than ‘a pool of glimpses’
Lithium for ALS study
Mutually beneficial research
Crowdsourcing
Informing Phase III
UCB’s partnership with PatientsLikeMe
Are patients competent to report?
Patient-driven PROMs
Drivers of online observational studies
ACKNOWLEDGEMENTS
INTRODUCTION
Hierarchies of evidence
Changing technological climate
AN INTERCONNECTED WORLD
Recruitment online
Double-edged nature of engagement
PATIENT REGISTRIES
Product registries
Disease or condition registries
Strengths and weaknesses
Commercial registries
Ethical considerations
Commissioning online observational research
Departments involved
Projects commissioned
PATIENT-REPORTED OUTCOME MEASURES
Greater regulatory acceptance
More talk than action
Tracking healthcare
Tracking takes off in the UK
Blood pressure guidelines revised
New kinds of research
PROMs via text
More efficient healthcare delivery
Better compliance
Growing self-tracking community
Tracking for public health
Changes in asthma management
Data donorship
ONLINE PATIENT COMMUNITIES
More than ‘a pool of glimpses’
Lithium for ALS study
Mutually beneficial research
Crowdsourcing
Informing Phase III
UCB’s partnership with PatientsLikeMe
Are patients competent to report?
Patient-driven PROMs
Drivers of online observational studies
ACKNOWLEDGEMENTS
