The Connected Cancer Patient: Future Vision and Recommendations

Connected - HeatherBlog post by Janet Freeman-Daily, Corrie Painter, and Stacey Tinianov

The March 14 #HCLDR Chat “Data Sharing for Research & Care” was so helpful in gathering inputs for the March 26 President’s Cancer Panel (PCP) workshop that the PCP decided they wanted another tweetchat prior to the July 9 workshop.  The PCP 2014-15 workshop series, Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes, aims “to answer timely, critical questions about connected health strategies and technologies and their potential to engage and activate individuals and patients, with the ultimate goal of improving cancer-related outcomes.”

The July 9 PCP Workshop in Chicago will focus on “The Connected Cancer Patient: Vision for the Future and Recommendations for Action.”  The agenda and participants for the July workshop are available here.  Three of the workshop participants — Janet Freeman-Daily (@JFreemanDaily), Corrie Painter (@corrie_painter), and Stacey Tinianov (@coffeemommy) — will be guests for the July 7 #HCLDR Chat and will use the chat to gather inputs for the workshop.  The PCP provided the topic questions and will participate in the chat using the handle @PresCancerPanel.

Connected health utilizes technologies such as mobile medical apps, medical device data systems, data sharing, software, and wireless connectivity to support individuals and their evolving relationships with their health and healthcare systems.  Patients are increasingly using online technologies and intelligent devices to take charge of their health and manage chronic conditions, including cancer. Growing evidence shows that connected health technologies can make healthcare more effective and efficient by electronically connecting patients to clinicians, patients to other patients, and clinicians to clinicians.  Still, it is not yet clear what a truly connected health system of the future looks like.

The stated goal of the third 2014-15 PCP workshop is to “recommend concrete actions to accelerate the development of a patient-centered approach to cancer prevention, treatment, and survivorship in order to maximize the potential of connected health technologies.  Participants will contemplate a scenario for a connected health system by the year 2020 and consider key areas for potential intervention, including the following:

  • “Personal health information and data sharing
  • “Person- and family-centered care
  • “Optimal use of devices, sensors, and apps
  • “National health information infrastructure”

Connected health fills needs not met by the traditional healthcare system.  A 2013 Pew Research study of people who have access to the Internet found those living with a chronic condition are more likely to:

  • Gather information online about medical problems, treatments, and drugs,
  • Consult online reviews about drugs and other treatments, and
  • Read or watch something online about someone else’s personal health experience.

They are also more likely to verify with a medical professional any facts found online.

According to a Health Affairs Health Policy Brief, patient activation refers to a patient’s knowledge, skills, ability, and willingness to manage his or her own health and care. Patient engagement is a broader concept that combines patient activation with interventions designed to increase activation and promote positive patient behavior, such as obtaining preventive care or exercising regularly.

The Internet plays a role in patient activation: it enables patients to learn more about their diseases and treatments through articles and videos on trusted sites such as government agencies (e.g., National Cancer Institute), medical societies (e.g., American Society of Clinical Oncology), academic cancer centers (e.g., Dana Farber Cancer Institute), and cancer advocacy organizations (e.g., American Cancer Society).  The Internet also enables patients with rare or serious diseases, as well as their caregivers, to find others who understand exactly how they feel and what they’re experiencing.  Online patient and caregiver communities form around specific diseases or treatments on patient-centered forums (e.g., Association of Cancer Online Resources [ACOR], Patients Like Me, Smart Patients, Inspire) social media (e.g., Facebook), and disease advocacy organization sites (e.g., LUNGevity).  Patient blogs describe individual disease experiences and advocacy efforts on a variety of platforms and media (e.g., CURE Magazine).  Some online communities connect patients and caregivers with researchers and clinicians (e.g., Twitter, GRACE).  Disease-specific cancer hashtags on Twitter are emerging as a powerful way to build collaboration across disease communities.

Patient engagement supports shared decision making between patients and their healthcare providers.  Shared decision making is a process by which the optimal decision may be reached for a patient at a fateful health crossroads. In this process, the patient is a participant in their healthcare and patient values guide all clinical decisions.  Preliminary studies indicate patient engagement and shared decision making can help reduce healthcare costs while increasing patient satisfaction and outcomes.  But not all patients are naturally inclined to become participants in their healthcare.  How can we encourage patient activation and engagement?  What motivates a patient to become engaged?

Some work has been done on ways healthcare systems can engage patients.  One model is detailed in the HIMSS Patient Engagement Framework; other suggestions are captured in various white papers.  However, few models or guidelines exist to show how the power of patients and patient advocates can be leveraged to help other patients become engaged.  To expand our knowledge in this area, e-Patient Dave deBronkart has initiated a project to promote the science of patient engagement.  How might such efforts be effectively coordinated across all stakeholders in the healthcare system?

Engaged patient communities offer a wealth of information that can be tapped to improve patient care and power healthcare reform.  Patient advocates have initiated or actively participated in clinical trial design, tissue biobanking, funding allocation, regulatory oversight, policy development, data sharing, personal device design, and information platforms.  However, there is no clear pathway for including knowledgeable, engaged patients in policy collaborations with healthcare institutions and governing agencies.  Some organizations seek to incorporate the patient voice, but the process is far from standardized.  How might access to patient expertise be formalized to ensure the patient voice is incorporated in healthcare reform and policy-making?

Connected health can play a major role in helping patients become engaged in their own healthcare.  Technology can provide communication tools that could encourage this engagement.  Apps could be built to provide information for specific diseases and treatments.  Interoperative platforms could enable care coordination across silos of care, care locations, and care providers.  Trained navigators, patient advocate translators, social media curators, adaptive search tools and shared rating systems could help patients find the most appropriate information from the most relevant trusted resource.  Which tools would be most effective, and how can their development be encouraged and funded?  And how can these resources be made available to ALL who need care, not just those in major population centers with high-speed connectivity?

To capture specific recommendations for the upcoming PCP Workshop, the next #hcldr chat will address the following questions. Please join us on Tuesday July 7th at 8:30pm ET (for your local time click here):

  • T1 What are critical unmet health care needs among patients and families that could be addressed with connected health approaches?
  • T2 How could connected health approaches promote patient activation & engagement, particularly in cancer?
  • T3 How can engaged patient communities be encouraged to contribute to health system reform? How might their role be formalized?
  • T4 What communication tools would help patients be more engaged in their care?

Be sure to include the hashtag #hcldr in all your tweets so others in the chat can see your comments.

Including the additional hashtag #cHealth4Cancer will make your tweet easier to find for those who are following the President’s Cancer Panel.  The PCP will Storify this chat for use during their July 9 Workshop.  PCP Workshop participants will live-tweet during the July workshop using the hashtag #cHealth4Cancer.

Resources

“Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes”, President’s Cancer Panel 2014-15, http://deainfo.nci.nih.gov/advisory/pcp/glance/ConnectedHealth14-15.pdf, accessed July 1 2015.

Agenda and participants. “The Connected Cancer Patient: Vision for the Future and Recommendations for Action.” President’s Cancer Panel 2014-15. http://deainfo.nci.nih.gov/ADVISORY/pcp/pcp0715/agenda.pdf, accessed July 1 2015.

Workshop description. “The Connected Cancer Patient: Vision for the Future and Recommendations for Action.” President’s Cancer Panel 2014-15. http://deainfo.nci.nih.gov/ADVISORY/pcp/pcp0715/infoFlyer.pdf, accessed July 1 2015.

The Center for Health Enhancement Systems Studies (CHESS) https://chess.wisc.edu/chess/home/home.aspx, accessed July 1 2015.

Fox S and Duggan M, “The Diagnosis Difference.”, Pew Research Center, November 2013, http://www.pewinternet.org/2013/11/26/the-diagnosis-difference/, accessed July 3, 2015.

“Patient Engagement,” Health Affairs, February 2013, http://healthaffairs.org/healthpolicybriefs/brief_pdfs/healthpolicybrief_86.pdf, accessed July 1 2015.

“Cancer Tag Ontology”. Symplur, http://www.symplur.com/healthcare-hashtags/ontology/cancer/, accessed July 1 2015.

Barry MJ, “Shared Decision Making—The Pinnacle of Patient-Centered Care.”,  New England Journal of Medicine, March 8 2012, http://www.nejm.org/doi/full/10.1056/NEJMp1109283, accessed July 1 2015.

“HIMSS Patient Engagement Framework”, HIMSS, February 10 2014. http://www.himss.org/ResourceLibrary/genResourceDetailPDF.aspx?ItemNumber=28305, accessed July 1 2015.

Scott D, Rosen H, Tritle B, Brown M, Clark A, Law P, Waco H, “Top Ten Things You Need to Know About Engaging Patients”, Institute for Health Technology Transformation, April 2011, http://ihealthtran.com/pdf/iHT2%20Patient%20Engagement%20Report%20-%202011.pdf, accessed July 1 2015.

deBronkart D, “Proposing a new *science* of patient engagement.”, ePatientDave.com, March 2015, http://www.epatientdave.com/2015/03/03/proposing-a-new-science-of-patient-engagement/ accessed July 1, 2015.

Image Credit

Connected – Heather – https://flic.kr/p/amjKMc

3 comments

  1. Editor · · Reply

    Reblogged this on Journeying Beyond Breast Cancer and commented:
    This is sure to be a fantastic Twitter chat. Patients are increasingly using online technologies and intelligent devices to take charge of their health and manage chronic conditions, including cancer. Growing evidence shows that connected health technologies can make healthcare more effective and efficient by electronically connecting patients to clinicians, patients to other patients, and clinicians to clinicians. Still, it is not yet clear what a truly connected health system of the future looks like. If you are curious or interested, or even curiously interested in this topic, you won’t want to miss the next #HCLDR chat on July 7.

  2. Reblogged this on HealthcareVistas – by Joseph Babaian and commented:

    Connected health – let’s take a look at what is happening and what’s next! Be sure to join the #hcldr chat this Tue, 7/7, at 830p E for a great conversation on this topic.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: