Donaghue Foundation conference notes

The Donaghue Foundation held their annual conference titled “Innovation in the quest for better health: Patient driven transformations in research, technology, and treatments.” The conference was well-attended by people from a wide variety of organizations, from hospitals to banks and non-profits.

The first speaker was Alejandro Jadad, MD, Chief Innovator & Founder, Center for Global eHealth Innovation, whose topic was “Will we be able to innovate in time? Meeting the health care expectations of the Obama generation”. He said that some health care professionals are reluctant to use technology in their practices but he always asks his patients if they have found any useful information on the internet. He compiles this information into a list of resources to give to other patients. He used an example of a colleague who has his patients in the operating room call their families in the waiting room to report on their successful surgeries. Another interesting example is taking a digital photo of a post-surgical wound and emailing it to a doctor, who can look at this and let you know how the healing is progressing without your even having to go into the doctor’s office.

The second speaker was Sharon Terry, MA, President & CEO, Genetic Alliance, whose talk was titled “Participants at the center: Accelerating pathway from research to health.” Mrs. Terry and her husband started an advocacy organization when they found out that their two children had a rare genetic disorder. Through the Genetic Alliance, she promotes an environment of openness that focuses on the health of individuals, families and communities and to make sure their perspectives are at the “center of efforts to improve health systems and use of genetic information.”

The final speaker was Ben Heywood, Co-founder & President of PatientsLikeMe who spoke about “The power of sharing with patients like you: Transforming research, treatments and care.” PatientsLikeMe is an online community for people with life-changing illnesses where they can share treatment options and coping mechanisms. The site has “created a platform for collecting and sharing outcome-based patient data and real life experiences amongst patients.” The company is for profit and sells the medical information (in aggregate form and without identifiers) to pharmaceutical, medical device, and insurance companies. Patients are aware of this and some feel that it could help find treatments for their diseases. One of the goals of the site is to help participants answer the question, “Given my status, what is the best outcome I can expect to achieve, and how do I get there?” I think one of the most powerful statements made by Mr. Heywood was when he stated that he has been to many conferences about health care where they talk a lot about patients – but patients are never at the table. As wary as I would be about sharing my medical details online, maybe it provides a way to bring patients into the discussion about the medical treatments that affect them.
Jen Ramirez