Support Without Borders: The Ovarian Cancer Online Community

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Support Without BordersThe Ovarian Cancer Online Community

OCRFA.inspire.com

Brian LoewCEO, InspireJuly 10, 2016


Social media and health…some numbersof internet users say they looked online for health information within the past year(Source: Pew Research Center)

• The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals

• 50% of health information research is on behalf of someone else

of consumers say that information found via social media affects the way they deal with their health (Source: Mediabistro)

72%

40%


Connected Patients Tend to See Better Outcomes

A growing body of scientific and anecdotal evidence supports our belief that patients who have the skills and confidence to become actively engaged in their healthcare have better health outcomes and experiences.


Healthcare is becoming more

consumer driven & patients are playing more of a role in their

health

Patients are increasing

technology use in relation to their

health

Social media is situated to be

a key way to engage with patients and opportunity to offer

them a personalized experience

Patient centricity and social media


Inspire overview

• Leading social network for health that connects patients and caregivers in a safe, permission-based manner.

• 200+ support groups for people affected by many different conditions including cancer, rare diseases, and many others.

• About 65% of members are patients and about 30% are caregivers.

Started in 2005

100 patient

advocacy partners

800,000+members

2,000,000 reported medical

conditions

8,000,000 posts


Support without Borders

• Inspire members can connect with other members in cities and states across the nation and globe 24 hours a day, seven days a week

• Inspire helps members with fewer resources, whether due to geography, socio-economic, or other reasons, to obtain health information that is otherwise difficult to find

• Inspire can help reduce the feeling of isolation that many people feel when facing cancer and other diseases


• 275,000 members with or affected by cancer• 36 cancer-related groups on Inspire• 350+ million words written by members of cancer

support groups on Inspire

Inspire Cancer Community

cancer.inspire.com/engage


Insights from Inspire’s 2nd annual member survey

• 10,150 inspire members completed the survey

• 41% of survey respondents are affiliated with one of our cancer communities • Cancer was the most represented therapeutic category among all survey respondents

• Nearly 90% of survey respondents reported using social media

• About 40% of respondents belonging to one of our cancer communities reported asking for or receiving healthcare-related advice on social media

• Respondents most often seek advice on treatment options, and the advice they get tends to influence their healthcare decisions

• 40% of respondents who belong to a cancer community confirmed that they offer health-related advice on social media


OCRFA Online Support Community• Launched in 2007, now with over 30,000

members

• Since that time the group has had nearly 684,000 posts

• Members learn about:• Learn about the latest treatments and clinical trials

• Get tips for managing their disease

• Share emotional support with others who understand

• Help each other advocate for the best care possible


The Depth of Healthcare Social Networks

• The average number of characters per post on Inspire is over 16 times as high as the most common post length on Facebook, and almost 11 times as high as on Google+.

Inspire Posts Facebook Posts Google+ Posts Inspire Comments

0

400

800

1200

1600

2000


Teal Sister Discussions

• There have been nearly 95,000 posts in the Ovarian Cancer Community in the last year

Topics New DiscussionsTreatment 936Recurrence 753Side effects of treatment 680What, me worry? 398Help desk 363Newly diagnosed 302Research 273


Connecting with Other Members

• Inspire members can search for other members by zip code, age, state and gender

Explore members in

This community

GenderMembers near you Age


Ovarian Cancer Community Word Cloud


Sisterhood

“It really hit me today how much all of you mean to me. To be able to get on this site every night while I'm laying in bed before sleep has become a habit and one I have come to depend on very much…You all have taught me so much. Not only about this disease…but how to handle my chemo, what to pack for the hospital visit, anything and everything I’ve asked of you, you have come back and given me a valuable answer….But most of all, I feel a sense of Sisterhood.”



Ovarian Cancer Patient/Caregiver Experience Survey Background• Purpose: To bring the perspectives of those with Ovarian

Cancer and their caregivers to life on a large scale.

• Launch: After about a month of planning and coordination with the Ovarian Cancer Research Fund Alliance, Inspire sent invitation emails to members of the Ovarian Cancer National Alliance Support community.

• Fielding: The survey was available for members to take from May 4th – 27th.

• Impact: During the nearly three week period in which the survey was available, 492 Inspire members completed the assessment.


• Of the 492 ovarian cancer patients and caregivers who responded to this survey:

85% 15%Patients Caregivers

6% 94%

Caregiver relationship to patient

% caregivers

Spouse/partner 39%Son/daughter 38%Brother/sister 15%

Mother/father 7%Friend 1%

<30 30-39 40-49 50-59 60-69 70-79 80+0%

20%

40%

60%

80%

100%

1% 3%13%

34% 37%

12%1%

Age of respondents

Ovarian Cancer Patient/Caregiver Experience Survey Respondent Overview


Ovarian Cancer Patient/Caregiver Experience Survey Respondent Overview (cont.)• Of the 492 ovarian cancer patients and caregivers who responded to this survey:

I don't know/Not sure

Other

Stromal carcinoma

Small cell carcinoma

Germ cell carcinoma

Epithelial

0% 20% 40% 60% 80% 100%

22%

25%

1%

2%

3%

53%

Don't know/Not sureOther

In remissionIV

IIICIIIBIIIAIICIIBIIAICIBIA

0% 20% 40% 60% 80% 100%3%

8%22%

18%26%

5%2%3%

1%1%

7%1%3%

Type(s) of diagnosed tumors Current ovarian cancer stage


Clinical Trial Participation• Roughly 1/4th of respondents reported participating in a clinical trial for ovarian cancer – these patients

primarily learned about the trial from their doctor/treatment center

• Only a relatively small amount of patients learned about the trial from online/other sources

24%

75%

1%

Yes NoDon't know/Not sure

Not sure/don't know a lot about clinical trials

Wanted to participate but couldn't get into a clinical trial

Didn't know that enrolling in a clinical trial was an option

Other

Didn't need or want to be in a clinical trial

0% 20% 40% 60% 80% 100%

13%

14%

14%

22%

36%

Reasons why not in trial


Perceived Impact of Ovarian Cancer on Patients• There is a difference in patient and caregiver perception of the impact of ovarian cancer

on patients’ lives; interestingly, but not surprisingly, caregivers feel there is a greater impact on their loved one than those with the disease

On a scale of 1 to 7, the average perceived impact of ovarian cancer on their lives as reported by patients was 5.69

On the same 1 to 7 scale, the average perceived impact of ovarian cancer on patients’ lives as reported by caregivers was 6.35

0%

20%

40%

60%

80%

100%

75%

57% 52% 50% 49% 47% 45% 44%

26%

5%

Life Areas Affected by Ovarian Cancer


Perceived Impact of Ovarian Cancer on Caregivers• 85% of ovarian cancer patients responding to the

survey indicated that they have a family member or friend who helps them manage their condition

Spouse/partner Friends Other family members

Adult child Other0%

20%

40%

60%

80%

100%79%

43% 38% 32%

4%

Who is a caregiver?

Patients and caregivers also have varying opinions on the impact of ovarian cancer on the caregivers’ lives – while the average perceived impact reported by caregivers on a scale of 1 to 7, was 6.17, patients indicated it was lower, 4.56, on average

Patient Perceptions

Caregiver Perceptions

35% Social life 50%

17% Relationships with family members

47%

18% Relationships with friends

30%

23% Ability to work 41%

31% Romantic relationships

34%

35% Finances 31%

12% Physical fitness 32%

14% Ability to complete household tasks

19%

27% Other 43%


Sources of Information Used for Ovarian Cancer• Those affected by ovarian cancer most frequently reported turning to their doctor(s), the

OCNA website, online search engines and the Ovarian Cancer Support Community on Inspire for information about the disease

% respondents

Physician or healthcare provider 65%

Ovarian Cancer National Alliance website (www.OvarianCancer.org)

64%

Online search engines (e.g., Google, Bing) 60%

Ovarian Cancer Support Community on Inspire 60%

Nurses 43%

Medical/scientific articles 38%

Materials provided by the doctor’s office 32%

WebMD 29%

Books or magazines 28%

Friends and family 26%

National Institutes of Health 25%

Ovarian Cancer Research Fund website (http://ocrfa.org) 23%

Blogs 20%

In-person patient support groups 18%

% respondents

Facebook 16%

PatientsLikeMe 16%

Mayo Clinic 14%

Foundation for Women's Cancer Website (http://www.foundationforwomenscancer.org/)

11%

Other 11%

OOCNA events (e.g., Ovarian Cancer National Conference)

10%

YouTube 7%

Medicinenet.com 5%

Videos 4%

Pinterest 1%

OCNA Instagram 1%

OCNA LinkedIn 1%

OCNA Twitter account 1%


Information Sought by Ovarian Cancer Patients and Caregivers• Overwhelmingly, when those with ovarian cancer or their caregivers turn to any of the previously reviewed

sources of information, they are looking for either treatment-specific information or information about the disease itself

Other

Insurance reimbursement support materials

Information on pharmaceutical-sponsored, patient support programs

Information on patient support groups

Support materials for family members/friends detailing your condition and its symptoms

Tips/tactics around better ways to communicate with your healthcare providers

Disease-specific information

Treatment-specific information

0% 20% 40% 60% 80% 100%

9%

9%

11%

21%

22%

24%

83%

86%


Discussing and Choosing Ovarian Cancer Treatments• Physicians are largely responsible for initiating and guiding the ovarian cancer treatment

decision making process

Doctor Patient Caregiver Other Other HCP

53% 36% 5% 3% 2%

Who initiates treatment discussions

Every visit Every other visit

Couple times a

year

Once a year

Never Don't know/not

sure

0%

20%

40%

60%

80%

100%

28%

14%24%

6%

18%9%

How treatment decisions are made

Entirely by doctor

Entirely by patient/care

giver

In collaboration with doctor

Mostly by doctor

Mostly by patient/care

giver5% 9% 67% 9% 10%

Frequency of treatmentdiscussions


Ovarian Cancer Treatment Priorities• While nearly 1/2 of respondents indicated that living longer was the most important treatment

outcome, patients and caregivers also ranked stopping disease progression high on their list

Most Important

Live longer 47%

Stop disease progression 20%

Minimize the risk of disease recurrence 15%

Have a better quality of life 14%

Slow disease progression 2%

Be more active 1%

Minimize treatment side effects 1%


Benefits of Belonging to Inspire’s Ovarian Cancer Support Community• Getting information about ovarian cancer is perceived to be the top benefit(s) of belonging to

the Inspire ovarian cancer support community

None of the above

Other

Providing emotional support to other patients

Learning about ovarian cancer clinical trials and treatment options

Answering questions and participating in discussions with other patients

Receiving emotional support from other patients who understand what I'm going through

Being able to ask questions that other patients can answer

Learning tips, resources, and other information that helps me manage my ovarian cancer

0% 20% 40% 60% 80% 100%

5%

7%

47%

53%

54%

57%

66%

78%


Thank you!

Learn more about ovarian cancer community: ovariancancer.inspire.comPartnership inquiries: [email protected]

Content advertising & community engagement inquiries http://corp.inspire.com/life-science-organizations/

Health & Medicine

Support Without Borders: The Ovarian Cancer Online Community