Matters of Health

(posted by session host Janice Linden-Reed, Posit Science Corporation)

Attendees:

Posit Science – cognitive health training for older adults

Intuit Quicken Health – developing a broad health information management service

Sophia’s Garden – support for families of terminally ill children

Starbright World – support for terminally ill teens and their families

HopeLabs – programs to target chronic illness in children

AgingCommunity.com – senior co-housing communities

Recurring topics: trust, coping, sensitive issues, storytelling, privacy, transitions.

Points of concern for health-related communities:

Issues of Privacy/liability in health discussions
Personally identifiable health info
Support relating to health topics/insurance – legal issues
Bashing the doctors/rating doctors
Moderating around a delicate topic – cultural norms
Distributing social resources
Taking control from institutions – in home care
Children/teens in health community
Coping with life journey transitions
Coping with treatment/post-treatment
Caregiver support/family-related support
Privacy
General health -> Crisis situations
Crisis at home

Discussion:

• Sick kids want to talk about movies and music, but then they get into health topics.They can get into very “unconventional” conversations about their symptoms and side effects and they need a supportive environment for it.

• In chat sessions, doctors preface their discussion with disclaimers for liability reasons.

• Lawyers have advised that the site not even recommend other health websites in case someone goes to those sites, takes their advice, and then ends up suing.

• HIPPA may not apply (we need to research this more).There is some question as to whether a community is a health information resource, as mentioned in the HIPPA provisions.If so, personally identifiable information could be a problem.

• When dealing with critically ill people, it is important to live in the moment.Make events festive!Make them feel like they are participating in something big.

• Giving back:It is an important part of healing to share their experience as well as help others.Storytelling about their journey is key. Journalling about the negative and the positive is helpful.Digital storytelling is being promoted by James Pennebaker.Narrative scrapbooking was also mentioned.

• On one site, about 6 community leaders were identified among active users.They were nominated by other users.Part-time moderators are given an hourly wage.

• There is an issue that moderators in health communities may have to be more highly skilled than other kinds of moderators to deal with issues of depression, elder abuse, and other situations requiring judgment and intervention.One site uses college students who have majors in health areas.

• Using actual professional therapists tended to turn online interactions into 1:1 therapy sessions.It works better to use general community participants.

• A broad-demographic community may be more challenging to run than a narrow demographic.Maybe a broad demographic community could be divided into narrower groups.Demographic relates both to age and interest as well as to condition.Condition ranges from wellness to crisis and acute to chronic.

• When dealing with sensitive crisis situations, the quality of the communication is important.Authentic communication without judgment or punishment is ideal.People should be encouraged to take responsibility for their own feelings. There was a situation described of a woman being banned by other members of her Yahoo Group because she was bashing a doctor too much.That was the opposite of a community with “authentic communication”.

• Older adults will focus a lot on life phases.“I’ve done the kid thing, I’ve done the adult thing and now I have a whole new phase of life available.”They want to explore the range of richness of experience including spirituality.

• People in challenging situations also want to focus on the support people around them.Children are very concerned about the toll on their parents.One role of these communities is just helping with coping.