Digital technologies are transforming patients into niche experts.
At HIC in Melbourne, keynote speakers will reflect on the ways that patients are shaping the agendas and transforming not only their health outcomes, but the way medical professionals practice.
The emerging shift points not only towards a significant change in one-on-one doctor-patient relations, but also to the rapidly growing number of online health centred communities of interest.
As HIC speakers Sylvia Freedman and Tim Blake explain, consumers are now taking the lead in influencing outcomes and distributing medical knowledge.
ONLINE INSPIRATIONS AND LIFELINES
Sylvia Freedman was tormented for 10 years before being diagnosed with stage-four endometriosis at the age of 21. While there is no cure for the disease, some drugs can alleviate the symptoms.
Her story of her journey from ‘darkness to light’ is both awful and awesome.
Sylvia reflected that girls and doctors learn that period pain is normal.
“As a result endo, which affects around 10% of women, can go undiagnosed for years,” she explained. Immediately after her diagnosis, she was bewildered when her gynaecologist thrust an IVF booklet into her hands and talked about hysterectomies.
Upon discovering that Visanne – a TGA approved drug for treating the symptoms of endometriosis – was unavailable in Australia, Sylvia’s mother started an online petition. The petition got traction on social media and ended up with 75,000 signatures within six weeks. The drug manufacturer, Bayer, responded by making the drug available here.
“There were 19,600 comments on the petition, mainly from women who had suffered from the disease. We were in tears as we read them – comments about trauma, pain and the destruction of careers and relationships,” Sylvia reflected.
The comments led Sylvia and her mother to set up a Facebook page where women could share their stories and support each other; and then to establish Endoactive as a charity.
What is amazing is that two ordinary people with courage and persistence became accidental pioneers. They are filling a ‘black hole’ in the health information and community support available for Australian women with the disease. Women from dozens of countries around the world have also joined the community.
A CARER’S JOURNEY
At HIC, Tim Blake will share his journey as carer for his wife who experienced a debilitating condition during her two pregnancies.
He said that as he was unable to find answers from doctors, he relied on online communities that provided a deep level of care, support and advice, from a patient’s perspective.
He found that while the medical profession recommends iron (folate) during pregnancy, some women, including his wife, who have a particular genetic variation, don’t convert the folate to what the body needs.
“Instead it builds up and causes miscarriages,” he observed. “There is nothing like them [virtual digital communities] in our health system.”
It has long been observed that laws and regulations are failing to keep pace with technological change. Tim will explore a similar phenomenon in healthcare. Advances in pharmacogenomics, the branch of genetics concerned with determining the likely response of individuals to therapeutic drugs, are polevaulting the working knowledge and the knowledge repositories of many GPs.
“Digital health communities that are safe fill a need. Patients gather together to find the best knowledge, and in doing so play a vital role not met by the medical community,” said Tim.
Digital health communities can disseminate information in a more open-minded way than medical professionals. They represent the ‘rise of the expert patient’, a role that can also put GPs very much on the defensive.
Dr Kudzai Kanhutu will bring another perspective. An Infectious Diseases Physician at Royal Melbourne Hospital who is undertaking research with migrants and refugees, Kudzai will explore the sometimes vexed questions of what data should go into patient records, whether there should there be comments that can give more power to patients, to what extent patients should have access to the data, and who redacts information when there is an error.
In healthcare, evidence-based practices usually win the day, even if the winning takes a very long time. This is where the research of Dr Sigall Bell, Associate Professor of Medicine at Harvard Medical School is of global significance. She is also the Director of Patient Safety and Discovery for OpenNotes. OpenNotes [http://www.opennotes.org] is a rapidly expanding not-for-profit initiative working to give US patients online access to the visit notes written by their doctors, nurses, or other clinicians.
Applications of the OpenNotes concept and research on its value and safety, span both traditional face-to-face visits and online consultations. At HIC, Dr Kanhutu will share the promising results of her large scale research on the relationship between the use of OpenNotes, patient engagement and safety outcomes.