Adopting Participatory, Personalized Patient Care

We are well past the pioneering stage and are, or should be, broadly embracing the participation and personalization for patients in our digital health world. And, in my love of alliteration, I oh so wanted to add more “p” words. Actively embracing also partnered, predictive, preventative, precision digital healthcare.

With the eHealth drive and impetus over the past decade coming from info-focused studies and reports, government largess, national and provincial agency leadership and a plan for EHRs and EMRs for all, we have made huge INFOSTRUCTURE progress. We have solid availability and adoption statistics that reflect the degree of ACCESS, uptake and the results of resourcing for repositories, registries, diagnostic and drug systems and shared electronic patient, health and medical records.

While some may think we’ve achieved the tipping point for digital health, we’re facing huge legacy system replacement costs, particularly for health information systems (HISes), we haven’t really met the interoperability challenge and the technology world has moved to the next generation of mobile tools, data analytics, consumer health solutions and cloud computing, well beyond our previous eHealth architecture target, the blueprint and all its versions we know so well.

Targeting the Next Stage – Patients in Digital Health
What will sustain the drive, resourcing, transformation and application of needed digital health solutions? PATIENTS will
– patients participating and partnering in their care. Patients and providers targeting very personalized care. Patients involved in our eHealth planning, programs, implementations, workshops, conferences and technology innovations.

I have been struck by the extent and visibility of patients in our conference and communications world in particular, over these past three to four months. While conferences are but one segment of our industry, they reflect current and upcoming practices in healthcare, medicine and professions. You may be aware of:

  • Stanford’s Medicine X Conference two months ago (September 2014) with at least 18 ePatient-related panels and presentations (and myriad more patient-related concurrent or poster sessions). This catalyst conference was about new ideas and initiatives on how emerging technologies advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The Twitter world was alive and trending on ePatients that week.
  • Health 2.0, Patient 2.0 and Doctors 2.0 presentations and conferences all support a wider healthcare view, that of a participatory process between patient and clinician.
  • McGill University’s media group provided a free conference on two innovative case studies in Participatory Medicine.
  • On my desk is the invitation from a private conference group on their 2nd National Forum on Patient Experience.
  • HISA, COACH’s sister organization in Australia, held a Participatory Health one-day pre-Conference just this August.
  • And in our own Canadian health informatics (HI) community, patient stories are achieving much greater recognition and visibility with, for instance, 10 patient storytellers that are part of Canada Health Infoway’s Better Health Together campaign and Greg’s Story as told by the Health Quality Council of Alberta.

And I could go on and you likely have many more examples of patient involvement at the podium, in the public communication program and also at the delivery level of digital health solutions. These noted events have major patient involvement, not only in panels and delivering presentations, but also just starting, in planning and determining content. When patients are even further engaged in OUR HI community – in the design, development, implementation and optimization of our eHealth solutions and software – we will make better decisions, provide better systems, achieve better health outcomes and provide better care to those patients.

Actions to Achieving ePatient Reality
In moving down that pathway, what do we have to really do to achieve all those familiar steps of engagement, awareness, understanding and adoption? What do we have to do to be willing to change, to know to change, to work with patients in new ways, to share ownership in the result and to make ePatients real?
Well, five actions are needed beyond going “e”lectronic and a slight apology for continued alliteration.

EDUCATE ourselves, our teams, our executives and stay up-to-date on the emerging ways and means to support and enable patient participatory and personalized healthcare. There is a lot of hype also on this direction and we need to filter the messages and keep targeting evidence-based data on the means to achieve the best partnership between your doctor and you, between your clinician clients and their patients.

EMBRACE this patient focus. For so long we’ve talked patient-centered care, we’ve drawn the patient circle in the middle of our PowerPoint diagrams, but what have we done to embrace the actual patient in our work? Embrace, in reality, this quickly changing ePatient world around us.

ENGAGE and talk, tweet, communicate and connect to real patients. At the writing of this column and for the GT2015 Conference, we are just tweeting out our request to connect to a few patients for planning the conference and joining our program committees. I expect we’ll be emailing and talking with someone who has not been connected with COACH in any way before and that is exciting. For advanced leaders out there, please advise me on how to best continue this action.

EVALUATE the many pathways to personal participation by patients in our initiatives. Each of us will need to find our own approach and process and there are pros and cons to the options to be considered. Take the time to identify and evaluate as you commit to adopting this new way to doing digital health business.

EMPOWER staff teams, executives, clinicians and particularly ePatients for patient participation in projects, initiatives, systems, services, conferences or events. Give them real participatory work and expect useful results. They will understand. They will get it and contribute well. And they will be a part of this evolving culture; a participatory, personalized, digitally-enabled healthcare, alliterations and all.

Your Feedback
How are you working with patients in new ways and supporting ePatients? Let me know what you’re doing and your ideas about this subject by emailing ceo@ or tweeting @donnewsham or @COACH_HI.

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