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CROWDFUNDING MEDICAL CARE: IDENTIFYING ETHICAL IMPLICATIONS DR.VALORIE CROOKS PROFESSOR & CANADA RESEARCH CHAIR, SIMON FRASER UNIVERSITY (BC, CANADA)

Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

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Page 1: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

CROWDFUNDING MEDICAL CARE: IDENTIFYING ETHICAL IMPLICATIONS DR. VALORIE CROOKS

PROFESSOR & CANADA RESEARCH CHAIR, SIMON FRASER UNIVERSITY (BC, CANADA)

Page 2: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

MEDICAL CROWDFUNDING

involves raising money from groups of people, often through the use of websites dedicated to this purpose

Page 3: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

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Page 4: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

WHAT DO THE NUMBERS TELL US?

GoFundMe reported that in 2014 US$150 million was raised for medical crowdfunding

Anticipated 25% growth in the number of medical crowdfunding campaigns and the funds they raise in the coming years

Page 5: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

ANALYTIC OVERVIEW

Page 6: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

WHAT ACTIVITIES DO CANADIANS WANT TO COVER THROUGH MEDICAL CROWDFUNDING? A THEMATIC ANALYSIS

Analysis in progress

Page 7: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SEEKING CROWDFUNDS FOR

“The health system in Canada does not recognize chronic Lyme disease as an illness and has no regulated treatment to cure it. Even though I was infected by the disease on this soil, I have to travel internationally to receive treatment. As a result, I am asking for your help and support to travel to a specialized Lyme disease and Cancer clinic in Germany.”

Travel & Movement

Daily expenses (parking, gas)

Relocation to be closer to hospital or caregiver

Medical tourism

Shifting from hospital to home, or home to hospital

Page 8: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SEEKING CROWDFUNDS FOR

Medical Treatment & Care

Actual costs of hands on medical care

Experimental treatments

Complementary & alternative care

Pharmaceuticals

Going elsewhere for a second opinion or better quality care

“We are working with a detox specialist and Herbologist to try and help Tammy. We have hope we can extend her life for just a little longer so she can enjoy some time with her son and family. We need funds to help with the cost of the natural medicine, and we would like to hire a nurse to come and help the family give Tammy the best possible care.”

Page 9: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SEEKING CROWDFUNDS FOR

“All this to say, Rhys is a miracle and he has changed our families lives for the better. However, medical appointments and cost of living in a different city, has put a severe strain on all of us financially. Paying for our empty home all the while living in a hospital room for 6 months nearly destroyed us.”

Supplement Income

Having to stop work for treatment

Reaching the end of employment insurance benefits

Caregivers needing to stop work

Having to maintain housing in two locations

Having to offset the financial burden to the family unit

Avoiding medical bankruptcy

Page 10: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

FUND MY TREATMENT!: A CALL FOR ETHICS-FOCUSED SOCIAL SCIENCE RESEARCH INTO THE USE OF CROWDFUNDING FOR MEDICAL CARE

Social Science & Medicine 169 (2016): 27-30.

Page 11: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SIGNIFICANT ETHICAL QUESTIONS BECOME APPARENT

Who benefits the most from medical crowdfunding and how does such crowdfunding affect access to medical care?

Typically a 5% fee per donation plus a 2.9% processing fee and 30 cent per transaction fee are charged. Language on these sites often masks the size of these fees.

There is great potential for fraudulent campaigns to be posted.

Websites typically place restrictions on the purposes funds can be used for. This may restrict access to treatments that are illegal in the home country, such as reproductive care or gender reassignment procedures.

Page 12: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SIGNIFICANT ETHICAL QUESTIONS BECOME APPARENT

Websites typically suggest that campaigns focus on emotional pull rather than actual need.

Websites typically suggest that campaigns be focused on unexpected need rather than systemic inequities that have shaped lack of access to care.

Websites encourage positive messaging and communication. For example, YouCaring: “include photos that show a positive, determined outlook in the face of adversity.”

How does medical crowdfunding affect our understanding of the causes of inadequate access to medical care?

Page 13: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

SIGNIFICANT ETHICAL QUESTIONS BECOME APPARENT

How can campaigner and donor privacy be affected by the practice of medical crowdfunding?

Websites encourage and sometimes even require disclosure of personal information for wide circulation.

Campaigns are open and searchable by online search engines, meaning individuals retain little control over who gains access to their information.

Campaigners are advised to set their social media security settings to ‘public’ to facilitate maximum exposure.

Page 14: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

APPEALING TO THE CROWD: ETHICAL JUSTIFICATIONS IN CANADIAN MEDICAL CROWDFUNDING CAMPAIGNS

Journal of Medical Ethics, in press, doi:10.1136/medethics- 2016-103933

Page 15: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

ETHICAL JUSTIFICATIONS

Personal connections between the recipient and the donor

Campaigns typically appeal to known individuals

”I’m guessing that if you’re reading this, you know and love Steve.”

Personal relationships are framed through an obligation to donate

“I truly believe that when we have someone we care about in need, we should gather around them as one big family and help as much as possible.”

Page 16: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

ETHICAL JUSTIFICATIONS

Detailed, and sometimes even graphic, descriptions of illness or injury

Focus on how need for support is impacting others

Explanations of how need can be addressed through financial assistance

The recipients’ need for help and the good that can be done through donation

Page 17: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

ETHICAL JUSTIFICATIONS

Giving back to recipients who have previously helped others

Emphasize the selfless nature of campaign recipients

“compassionate, loving, giving and one of the most caring women on this planet.”

”literally one of those people who would give you the shirt off his back.”

Articulate previous ‘good deeds’ performed by the recipient

A “person who was always there for others when needed, and now its come to a time in his life where he needs us.”

Page 18: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

INJUSTICE & INEQUITY

Health system, health and social care, and insurance-based inequities were rarely mentioned in campaigns or cited as a justification for the funding request.

Is this masking exposure to injustice or unfair circumstances? And does the presence of crowdfunding lessen pressure for reform?

Page 19: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

OUR NEXT STEPS

Page 20: Valorie Crooks, Crowdfunding Medical Care: Identifying Ethical Implications

ACKNOWLEDGEMENTS

Collaborators: Drs. Jeremy Snyder and Peter Chow-White

Research Assistants: Annalise Mathers and Anika Vassell

Funding: Canadian Institutes of Health Research

Valorie Crooks holds the Canada Research Chair in Health Service Geographies and a Scholar Award from the Michael Smith Foundation for Health Research