More from the #AZOncology Summit.
Patients may not hear about clinical trails from their doctor. If they are at a research hospital they might hear about trials.
Lungevity suggests creating a clinical trials navigator. This would either be remotely or online. Not everyone is online though.
You have to educate both health care providers and patients.
Need a list of patients that have been through trials that are willing to educate new patients that are at a decision point in entering clinical trials.
A lot of notifications about trials that fit your profile don’t in fact fit the patient’s profile. Lists can be overwhelming.
Who will cover the costs of attending clinical trials. Many patients are not working and on disability.
Is there a misconception about clinical trials?
- They are too far out to be a possibility
- A stigma about being a “Lab Rat”
Clinicians may select out clinical trials because of organizational conflicts.
Patient’s can have problems getting their medical information to the organization hosting the trial. e.g. where are your biopsy results. Are they in a different part of the country.
Cancer 101 is working on “the Clinical Trials Alumni”
Patients need navigators and people that have experience in their shoes and understand where they are in their health journey.
Peer to Peer discovery is important.
Can we promote survivors as patient navigator volunteers to supplement social workers and therapists.
Harold P Freeman – Patient Navigation Institute in New York.
Lungevity has a caregiver resource center.
Caregivers need more support.
Patient advocacy organizations often don’t know what other organizations are doing.
Survivorship programs
Healthy survivors often stay away from cancer discussion forums.
What do we need:
- varied meeting times
- outside the hospital setting
- guest speakers
- Hearing from nutritionists, physiotherapists, legal advisors.
Lungevity holds a HOPE summit for survivorship.
Resources for hope
@TheTutuProject is an example of a project that inspires hope. What other resources are out there.
Fascinating to discuss the role of Art in generating hope and inspiration as a critical aspect of survivorship. Storytelling is part of that art. It helps people relate.
How do we help Patients understand the complexity of scientific information
Cancer 101 has patient scientific reporters that go to science conferences to report. They also are working on Patient Cliff Notes.
METAvivor is working on web resources providing a research perspective.
Lungevity hold researcher webinars to explain what is happening in the research community and drug trials.
What can drug companies do to help patients and their advocacy organizations
AZ is recognized for a Patient Assistance program.
Great idea from Sarah Krug (Cancer101) – Why can’t Pharma companies publish a Patient Stakeholder annual report that focuses on what the company has done for patient populations.
Show the personal side of the people at AZ. Help patients understand what it takes to create a drug.
There is a project on Medstartr.com to fund patients attending healthcare conferences. Pharma could potentially fund some of these scholarships to help bring Patients to the table:
http://2.healthca.mp/1uB7PZx
Bringing Patients to the table will drive more change in healthcare.
Mark Scrimshire
Health & Cloud Technology Consultant
Mark is available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. If you need help to move, or create, your health applications in the cloud let’s talk.
Blog: http://2.healthca.mp/1b61Q7M
email: mark@ekivemark.com
Stay up-to-date: Twitter @ekivemark
Disclosure: I am a Patient Engagement Advisor to Personiform, Inc and their Medyear.com platform. Medyear is a powerful free tool that helps you collect, organize and securely share health information, however you want. Manage your own health records today.
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