Come on! Let’s move Patient Engagement into Action

While others either mention or lament patient -engagement, -centricity, -centeredness, or whatever is trending this week, Patient Advocates In Research (PAIR) has been taking action for decades!

The latest DIA Global Forum article (co-written with Patty Spears) offers insights about some of our work in clinical research, entitled,

Beyond Patient Engagement: How Research Patient Advocates Contribute to Product Development

We work on everything, from early concepts and biomarkers to preclinical testing, protocol design and approval to recruitment and retention, to understandable trial results and access to better treatments through healthcare delivery. That may also mean challenging companies and hospitals on justifying their outrageous prices.

I’ve also been sharing tips at various companies and conferences lately – will share some in the near future. Recent topics have included: 1) informed consents; 2) working with patient groups; 3) infusing patient advocates into trial designs; and 4) building strategic communication into development.

September activities include:

  • A presentation at the DIA Clinical Trial Disclosure & Data Transparency Conference on what people said about a breast cancer study summary vs. breast cancer patients. Their feedback was used by Health Literacy Media (HLM) to create a better summary format.
  • A presentation at the CBI 2nd Annual Lay Summaries Summit about making public study summaries useful for people. Hint – it starts by NOT using ‘lay’!
    • We’ll also hold a panel discussion on innovative ideas for public summary implementation. After all, now that trial sponsors must produce trial summaries (thanks to EMA’s regulation), we need to make sure patients actually get them.
  • Many upcoming improvements for the active DCIS COMET Study with the project manager, investigators and fellow members of the Patient Leadership Team (PLT).
  • Articles on immuno-oncology that were finally published with fellow members of the NCI Investigational Drug Steering Committee (IDSC). I appreciate being included so that important changes can improve patient outcomes.
    • Also reviewed progress and new proposals for the NCI Experimental Therapeutics (NExT) Program with different stakeholders. Spread the word!

There’s more, but I’ll stop for now. Yes, it’s been busy! Time to get everyone involved in improving research outcomes for patients. It seems like a slow slog sometimes, but momentum is building. Be sure to share your thoughts here & thanks!

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