Caregivers and front-desk workers know patients — and their communities — best

Yes, health information seeking is generally episodic. People usually seek it in an emergency, when a symptom flares, or when facing a decision. About half of health data tracking is also episodic, such as when someone’s headaches come back or they have a new goal.

However, one of the bedrock findings of the Pew Research Center’s work on this topic is that half of health information searches online are conducted on behalf of someone else. Meaning: a caregiver, defined very broadly. And, on the specific topic of health data access and use, I’ll quote a participant in last week’s community meeting in Philadelphia:

“Caregivers see the data disconnects that clinicians and public health workers cannot. How might we tap into that knowledge?”

I was also struck by this story, also shared in Philadelphia:

“My mother carefully tracked my grandmother’s health and, when she died, my mom was left with notebooks of data — the narrative arc of her illness, which could inform other people’s health journeys. Mom was left wondering what to do and thought about volunteering at a local senior center, accompanying older people to their medical appointments since she had developed that unique skill set.”

Again, how might we tap into the knowledge and experience of caregivers when we design health data systems and health information resources?

Thinking even more broadly, another participant in the meeting pointed out that front desk workers are the ones who know the community best. A quote from my post on the RWJF blog:

For example, if it is determined that a patient needs nutritional counseling (based on their data, let’s say), the front desk worker (not the MD or RN) will be able to say to that person: “To get to the nutrition counselor’s clinic, don’t take the 22, take the Broad Street line.” (Translation: they’ll know the city — particularly the public transportation options — better than the executives will. And that’s where the rubber hits the road, when the health data meets community data, such as traffic patterns and bus lines.)

How might we design a system that leverages community knowledge?

See, for example, the “Supporters of Health” program at Wake Forest Baptist Medical Center. Women who had been on a cleaning crew, but had really been serving and advising chronically ill patients on the wards, were given training and redeployed as community health workers:

“Having come from similar circumstances as their patients, the four women help them cope with a range of needs–from understanding how to take their medications to getting assistance to pay their rent. In just a few months, the supporters helped cut hospital readmission rates for these patients to 2.5 percent.”

Four more community meetings are planned for the Data for Health project. And of course the community that never sleeps (ours, online) will keep the conversation going! Let’s continue collecting these ideas and pointing out opportunities.