200 million people in the United States (80% of the adult population) are affected by complex health issues. Millions of patients and families deal with the difficult choices surrounding chronic and terminal health issues every day. Despite the fact that those families are in the vast majority, commonly they feel that “when it happens to you, it’s like it’s never happened to anyone before.” I Know Something is working to unlock the knowledge we each carry with us to help other patients and families find their way – you can read more about how in their recent Three Things Thursday post.
In 2-3 minute videos, the I Know Something project has family members and patients talk about the tough choices they faced in dealing with serious illness; the videos function as tools for other families and patients going through similar experiences. Social media has enabled the sharing of personal stories to become increasingly the norm. Whereas an Instagram post can help address the sense of being alone, I Know Something takes it a step further by providing guided reflection questions and connections to targeted resources. I Know Something identifies the experiences common to many difficult illnesses – talking with your kids, making tough choices in end-of-life care – and aims to make information on what to ask, who to turn to, and how to find support accessible. I Know Something produces and curates the videos that appear on their site and offers guided reflections, unlocking the power of those stories as useful tools for viewers.
In this LabStorm, feedback practitioners gave the I Know Something project feedback and asked questions about the platform’s features and uses. Their feedback is instructive and, as a new platform, I Know Something itself is surprising: what’s appealing about the platform for patients and families – those making and those watching the videos – can teach us something about general feedback practice. The problems that Jim Rosenberg has worked through reveal something about feedback and stories on digital platforms. Here are three things which I Know Something can teach us about feedback at large:
- Framing is everything. Many patients express frustration with traditional support groups and the health system – in those settings, some things are “not ok” to feel or do. In medicine, professionals are focused on treatment and intervention, which makes candid discussions about family dynamics and the messiness of illness difficult if not impossible. In one video, a cancer patient describes her fears and exhaustion from her treatment, and how the overwhelming anxiety before a tumor scan sparked a difficult but honest conversation with her husband about her feelings. Medical professionals had instructed her about the specifics and importance of her treatment, but they weren’t in position to talk her her with her feelings, relationships, and her quality of life. In telling her story, the patient was hopeful that she could help other patients work through the anxiety and depression that can be such a big part of cancer treatment.
- Learn which questions to ask. The stories and testimonies in I Know Something’s videos can be an important source of information as to how treatments will affect quality of life and the family dynamic, not just health outcomes. But the videos also prompt viewers to start asking the questions they might not have known they need to ask. End-of-life care decisions are difficult, and like any decision can only be made well if the potential effects – on health, on quality of life, on family dynamic – are clearly understood. But understanding the implications of a decision is difficult for most families who are unfamiliar with particular treatments. Hearing the unexpected consequences of treatments from other patients expands the viewer’s sense of what they must consider, and what questions they should ask medical professionals. Showing families and patients that it’s okay to not know what they don’t know, I Know Something’s feedback can spark these questions.
- Closing the loop means talking to the people you’d least expect. LabStorm participants explored the gap that exists between the videos’ subjects and audience. Is there a way for patients who make videos to receive feedback from their audience, or answer questions that their video might have generated? And how can I Know Something integrate itself within the support communities that patients and families have already formed? Support organizations and communities exist for specific illnesses with active support spaces online and off – I Know Something can easily be integrated in those communities with its peer-to-peer model, and potentially bridge them through the common considerations and testimonies about making quality of life choices. Could the peer-to-peer learning of I Know Something, which largely operates outside the confines of the professional medical setting, be a feedback mechanism for medical policy, and help reorient end-of-life and long-term illness care? Ultimately, the medical system could learn a lot from these patients, and from how these patients are learning from and supporting each other.
As I Know Something grows, we are excited to see what other surprises the platform has in store for teaching us about feedback and helping patients and families through difficulty. Want to stay involved? Reach out to us at [email protected] or contribute your thoughts below.