Through a series of offline asynchronous conversations the Guidelines Quick Team has reached the conclusion that our guidelines will have more transformative power if we narrow the focus to a very small number of items (about 3), that are measurable, achievable, and have the power to instigate change. We will keep developing the broader, deeper set of guidelines as a roadmap or guide to best practices for those who are interested in going beyond the basics.

In a phone conversation on 6/29/11, Indu Subaiya, Carol Peckham, Deb Linton, and Alan Greene focused on 3 items that would be the basis of a grassroots seal for providers committed to Participatory Medicine:

1)      Health Data in the Hands of Patients. Participatory providers will provide direct access to laboratory values and other health data proactively and as a matter of course. “We’ll call you if there’s an abnormal result,” has no place in Participatory Medicine.

2)      A Patient Advisory Council. Each participatory provider will convene a group of patients to provide input and feedback about all aspects of the practice. The group will meet at least twice a year, will review suggestions and feedback solicited from all patients, and will make their work visible to all patients in the practice.

3)      Resources in the Hands of Patients. Participatory providers will provide resources for additional learning about every diagnosis made (including age-appropriate health maintenance for a normal physical exam). These resources may be physical handouts, web Urls, book titles, the names of mobile apps, etc.

Providers committing to these three items would be eligible to display the Society Seal. We would maintain a public list of these providers and the opportunity for patients to nominate and comment on Participatory Medicine in the practice.

The Guidelines Quick Team will be presenting recommendations to the Society Board on 7/21/11. We will be honing these ideas between now and then. Comments, suggestions, and participation are, of course, welcome.

1. Welcome, encourage, and value patients as informed and involved participants in their care to the extent they are willing and able to do so.
2. Listen to patients with respect and cultural sensitivity.
3. Ask patients what matters to them throughout the course of care.
4. Collaborate with patients to identify and monitor treatment and self-care goals.
5. Notify patients about treatment options and provide information about their benefits, risks, and costs — and will notify patients in advance of the professionals own fee schedule, when possible.
6. Provide patients a clear explanation and access to all information and data about their own health and health care.
7. Serve as a knowledgeable resource about the tools, communities, and databases patients can use to support participation in their care.
8. Work with patients using approaches that identify and minimize barriers to timely and effective action by patients.
9. Solicit feedback from patients.
10. Involve patients with central, meaningful roles in practice improvement efforts, such as quality improvement teams.  This might include involving patients in developing patient education materials and evaluating practice design, staff, and workflow.
11. Respect patients’ time.
12. Use technology as appropriate to facilitate meaningful participation.
13. Understand that patients spend most of their time outside the healthcare setting and outside of healthcare professionals’ control.
14. Ask patients whether they search for health information, from where, and how it affects their behaviors; respect these information-seeking behaviors.
15. Learn about online resources patients use for health.
16. Teach patients about online resources you have discovered or learned from other patients.

These behaviors may be supported by information management or structural functionalities including:

1. Email or other timely non-visit communication options for patients.
2. Electronic medical records.
3. After visit summaries.
4. Continuity of care communications.
5. Direct patient access to lab values, growth charts, immunization records, and other health data.
6. Evidence-based decision aids.
7. Ability to identify and target patients who would benefit from preventive care or tests.
8. Creating reminders for patients and providers.
9. Creating a patient advisory council.
10. Feedback surveys and suggestion boxes.
11. Open scheduling.
12. Extended hours.

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Current JoPM guidelines:
Health professionals collaborate with patients to ensure that they have the knowledge, skills and support to make informed decisions about their care as they work together to achieve the patients’ aims. Health professionals will:
1. Encourage patients to become informed and involved participants in their care to the extent they are willing and able to do so
2. Provide patients a clear explanation and all information and data about their own health and health care.
3. Serve as a knowledgeable resource about the tools, communities, and databases patients can use to support participation in their care.
4. Communicate with patients using approaches that minimize barriers to timely and effective action by patients.

Existing SPM Criteria

III. Health-related institutions (hospitals, insurance companies, pharmaceutical and device manufacturers) support people – sick and well – in becoming active, competent participants in their care, recognizing that they bring a range of skills, abilities and levels of commitment to this task, and that these attributes not only differ among individuals but also within individuals over time. There will always be those whose participation consists of delegating decisions and care to others. Health-related institutions will:

1. Maintain and enforce policies that ensure the availability of individuals’ information about their health and health care while guarding the privacy of this data.
2. Maintain and enforce policies that facilitate individuals’ full participation in their care but do not require it
3. Accommodate diversity in literacy, culture, ability and level of functioning and support the ability of all to participate in their care.

Suggested themes to add:

1. Disclose any and all uses of an individual’s personal health data prior to receiving data and prior to provision of any service.
a. Disclosure should be written in clear, consumer-friendly language and be posted on any consumer-facing website

2. Deliver all personal healthcare data upon request within x days.
a. Deliver it electronically if it is in electronic format

b. Fees to be waived for electronic delivery

*Existing recommendations* – look at minimal recommendations – JCAOH; Meaningful Use (check http://www.jointcommission.org/Standards/soc.htm)

3. Signal outwardly whether you adhere to meaningful use standards and if so how
a. Provision of patient educational materials

b. Provision of care summaries etc.

4. Provide continuity of care documentation at discharge and demonstrate processes for sending data to larger care team – make general enough to apply to websites too – so you can move data to your personal provider;
a. <<Suggest establish care transition processes that support continuous patient engagement from hospital setting through follow-up care at home.>  E.g. Denver’s Transition Care program
5. Provide training to all staff on participatory policies
a. Educational materials at all stages of care

b. Means for answering questions in a timely manner

c. Access to healthcare data

d. 1- pager; online courses – 6 hours every couple of years; recertification courses

6. Demonstrate clear and responsive patient feedback processes
a. Where does someone file a complaint about service process?

b. What happens to these complaints?

c. Mechanism for patient input when designing processes

7. Disclose all publicly available metrics/open government data about your institution – e.g. Hospital Compare data etc. – make this available on your website
a. Authoritative, Reputable data – we can identify sources
b. Ones you are aware of
8. Physical space and design – cultural sensitive, disabilities, compassionate, training
a. When making rounds with students, ask permission first – and/or have training to doctors that ensures sensitivity during rounds

b. Clinic rooms and offices – have chairs for patients to sit on, not just exam tables

9. Establish Patient Advisory Council
10. Ensure transparency, patient engagement and education, guidance around cost, pricing, reimbursement, policies, financial processes – disclosure.  Materials should be consumer-friendly, easy-to-understand.  Disclose fee schedule.

Existing SPM Criteria

II. People – sick and well – need to be participants in their own care. This means they choose the level and type of participation that suits their needs and abilities. To make this choice, they must:

1. Take action on behalf of their own health. This might include lifestyle changes and preventive actions.
2. Know when and how to call on professional care providers for help and advice and have access to them
3. Know when and how to call on friends, family and other social networks for help and advice and have access to them
4. Know when and how to find trustworthy information to inform health-related choices and have access to it
5. Know where to find support and help to supplement their inability to meet the expectations of full participation in their care and have access to

Existing Themes to Add

1. Explore, evaluate and, when appropriate take advantage of web-based and mobile technologies that may enhance participation

2. Seek evidence-based and reliable sources of information.
a. First, ask your health provider’s advice for trustworthy information to inform health-related choices.

b. If your health provider is negative or uncertain, medical librarians can be very helpful and informative.

c. There are also useful sites that assess websites for quality. For example, Health on the Net Foundation (http://www.hon.ch/) is particularly useful for determining the merits of health sites..
3. When seeking a provider and/or medical institution look for reliable sources for comparison and assessment.
a.  Ask knowledgeable family members and friends  for recommendations

b.  Know and use reliable internet sources for grading providers and medical institutions.   Beware of internet grading systems that do not take into consideration high-risk procedures and/or patients when reporting date on complications, morbidity, and mortality rates.
4. Communicate effectively with the clinician
a. At the first office visit.  If the clinician doesn’t ask, volunteer family and personal physical and mental medical history.  Bring a list of all current medications (including supplements and alternative products).

b.  Over the course of treatment.  If patients bring on-line information on their condition to their providers, they should be sure they have a clear understanding of the material before they come in so they can comprehend the physician’s responses.
5. Take responsibility for knowing the right questions on insurance and cost issues
a. Compare insurance coverage options and match with personal situations.

b.  Keep good records, including receipts, invoices, documention of services, and requests for reimbursement.
6. If diagnosed with a chronic disease, prepare for the long duration
a. Comply and adhere to treatment regimens after agreement with provider on best care approach.

b. Educate themselves as much as possible on procedures, devices, medications being taken, including interractions, adverse effects, and indications of effectiveness or failure.

c. Be well aware of the symptoms of drug adverse effects, interractions, and failure and immediate communicate these events clearly with the clinician if they occur.

d  Be knowledgeable about symptoms that indicate an acute exacerbation, relapse, or deterioration in the condition. Also be aware of signs of improved health and record events that might be responsible  for improvements.   .
7. Patients undergoing surgery, procedures, or expensive tests should be well prepared

8. Plan for the end of life
a. Prepare advance directive,, medical power of attorney, and understand specific state laws that apply to end-of-life care, including financial issues.

The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels. Join us!

Our two founding core initiatives are the e-patients.net blog and the Journal of Participatory Medicine.