Patient stories are important, but there are not many places where those stories to be seen, read or heard. There are a few patient-led sessions at conferences. Patients are sometimes guests on healthcare-related podcasts. Healthcare organizations post patient stories on their websites. I believe, however, that more can be done…I’m just not sure HOW this could be achieved.

Is it enough just to tell more patient stories in more places?

One question I have is whether there needs to be more variety in the type of patient-centric content that is published/pushed out. Do we need more than personal patient stories? Or is that the type of content we need, just more of it?

I bring this up because when you look at the websites of healthcare organizations, almost 100% of the patient-related content are inspirational patient stories. This makes sense given the audience and the purpose of those website. People WANT to read about patients who are being successful in their journeys. Here are a couple of examples:

• Cleveland Clinic Patient Stories: https://my.clevelandclinic.org/patient-stories
• Mackenzie Health Patient Stories: https://www.mackenziehealth.ca/about-us/patient-stories

In contrast, mainstream media tend to report on tragic patient stories more than they do positive ones. Here in Toronto the news outlets often cover stories about patients who had poor outcomes after being made to wait excessively or who are struggling to get coverage for much-needed treatments or medicine. For example: Patients wait in pain as a surgeon fights to get paid — all in a battle over health-care dollars

Stories like the one above is also important because they give context to complex healthcare stories.

So do we just need to tell more patient stories like these covered by media outlets? Or do we need more variety?

More patient-led stories?

Over at the Society for Participatory Medicine, there are many stories BY patients on their site, not just stories ABOUT patients.

For example, HCLDR community member and patient advocate Stacy Hurt, wrote an article about the changes the FDA’s release of patient-focused drug development guidance documents and it’s potential impact on patients. There is also an article by Julie Flygare, JD on the benefits of including patients on expert advisory boards.

Another recent example is a story that Dr. Nick van Terhayden was involved with – one that caused a bit of controversy, but one that I believe put a much needed spotlight on something that was hidden behind the curtain at insurance companies. In March 2023, ProPublica published an exposé on how Cigna rejects claims without actually reading them. The article featured the experience that Nick had with Cigna.

If you haven’t read that article, I would highly recommend it.

There are many other publications that put out patient-centered content:

• The Patient Experience Journal – a peer reviewed open publication from The Beryl Institute that features scholarly articles on patient experience
• The HIT Like a Girl Podcast often features patients

Patients Self-Publishing

Social media and personal blogs have long been a place where patients can self-publish their own stories.

Sadly, we recently had an example of this via HCLDR friend and active community member Gregg  Masters. Gregg’s son Anthony (Tony) recently passed away unexpectedly while being treated in hospital. His death was not something that should have happened the way it did. Gregg has used Twitter and his own site to tell the story. See #TeamTony

Gregg is effectively using these platforms to shed light both on his son’s life and to point to a systemic issue of “not my problem/patient” in healthcare.

HCLDR Discussion

What I would like to do with the HCLDR community is talk about the various types of patient-centric content and what can media outlets do to increase/improve their coverage of it.

This topic is personal for me because I work at a healthcare media outlet. I would like to know what I can do to better amplify patient voice and bring attention to important issues that impact patients.

Please join the next HCLDR tweetchat on Tuesday June 27^th at 8:30pm ET (for your local time click here) where we will discuss:

• Q1 What types of patient-centered stories do you like to read/watch? Personal stories from patients? Patient authored stories? Industry news that impacts patients? Success stories about patient involvement.
• Q2 Is there such a thing as too many patient stories told? For example if healthcare provider or media outlet published 1 patient story each week is that over-saturation?
• Q3 What patient-centered stories are missing from or are not getting enough attention from media outlets?
• Q4 If stories are not covered by mainstream or industry media, what other effective ways can these stories be told so that they can be heard? (ie: social media? Personal blogs?)

References

Rucker, Patrick. Miller, Maya. Armstrong, David. “How Cigna Saves Millions by Having Its Doctors Reject Claims Without Reading Them”, ProPublica, 25 March 2023, https://www.propublica.org/article/cigna-pxdx-medical-health-insurance-rejection-claims, accessed 25 June 2023

Hurt, Stacy. “Patients and Industry: Starting Our New Life Together in 2023”, Society for Participatory Medicine, 1 February 2023, https://participatorymedicine.org/epatients/2023/02/patients-and-industry-starting-our-new-life-together-in-2023.html, accessed 25 June 2023

Flygare JD, Julie. “Expert Advisory Boards: A New Model for Co-Exploration”, Society for Participatory Medicine, 4 January 2023, https://participatorymedicine.org/epatients/2023/01/expert-advisory-boards-a-new-model-for-co-exploration.html, accessed 25 June 2023

Oliver, J., Lobban, D., Dormer, L. et al. « Hidden in plain sight? Identifying patient-authored publications”, Research Involvement and Engagement, 11 April 2022, https://doi.org/10.1186/s40900-022-00346-w, accessed 25 June 2023

Pelley, Lauren. “Patients wait in pain as a surgeon fights to get paid — all in a battle over health-care dollars”, CBC, 25 June 2023, https://www.cbc.ca/news/health/scoliosis-surgery-patient-wait-surgeon-1.6884504, accessed 25 June 2023

Rehder, Kyle J. et al. ”Strengthening patient-family engagement amidst a pandemic: Lessons learned and paths forward”, Patient Experience Journal, 27 April 2023, https://pxjournal.org/journal/vol10/iss1/12/, accessed 25 June 2023

Image Credit

Photo by brotiN biswaS: https://www.pexels.com/photo/selective-focus-photography-of-magazines-518543/